UBC Wiki - User contributions [en]

Documentation:EHealth Strategy Office/Tech Support/Website/Working With WordPress

2012-07-26T16:48:36Z

Danhooker: featured image instructions updated

{{Template:Documentation-eHealth_Strategy_Office}}
{{Template:Documentation-eHealth_Website_Help}}
__TOC__
==WordPress Resources==
Basic WordPress tutorials are available on the UBC Wiki and Wordpress.org.

'''UBC Wiki:'''
* [[Documentation:WordPress_Basics/Basics_1_Guide|UBC Wiki - Basics 1 Guide]]
* [[Documentation:WordPress_Basics/Basics_1_Guide/Add_Images_and_Media|UBC Wiki - Basics 1 Guide, Adding images and media]]

'''WordPress.org:'''
* [http://codex.wordpress.org/Getting_Started_with_WordPress#Posting_in_WordPress Wordpress.org - Posting in Wordpress]

What follows is a contextualization of those instructions for the EHSO Website.

==The Basics==
===Definitions===
There are two basic types of content on a Wordpress site: pages and posts.

'''Pages''' are reserved for more static content, such as ‘About Us,’ ‘Mission and Vision’ and the staff biography pages. These pages typically contain content that does not change often, and have URLs that do not contain their publishing date (e.g., /about-us/organization/kendall-ho)

'''Posts''' are used to create time-sensitive or otherwise new content on an ongoing basis, and, rather than being inserted into the page hierarchy, posts are assigned categories and tags that are updated in real time when new posts are added. You can tell posts from pages by the date recorded in the URL (e.g., /2011/05/13/example-blog-post).

'''Categories''' contain posts related to broad themes, such as projects (e.g., iCON) or areas of interest (e.g. Technology, Education, Research). Categories cannot be created for each post, any new post must be put into one or more existing categories. If you feel a category is missing or is conspicuously absent, please bring your concern to the BWG.

'''Tags''' are keywords that provide further context for the category and can be assigned to every new post by the author (e.g., ‘telemedicine’, ‘first nations’, academic detailing, community engagement). Tags may one word or a phrase.

===User Profile===
Every member of the site also has a User Profile. This is different than your biography page; it is a profile for your user of the actual WordPress site.

This is the page where you can set up a user picture, and the name under which your posts will appear.

==Logging into the Website==
When you navigate to our [http://ehealth.sites.olt.ubc.ca/ website], at the very bottom of the page there is a small link to "[http://ehealth.sites.olt.ubc.ca/wp-login.php?action=cwl Site Administration]" which will take you to the login page. You will need a [http://www.it.ubc.ca/cwl/homelink.shtml CWL] to join the website.

==WordPress Editor==
There are two ways to create and edit content on any Wordpress site, including the EHSO website: the Visual Editor, and HTML. The Visual Editor works like any word processing software with familiar buttons. The writing on the screen shows what your post will look like when you publish it to the website. It is not required to know anything about website editing to use the Visual Editor, and for this reason it is recommended for general use.

[[File:VisualEditor_1.png|thumb|none|200px|The WordPress Visual Editor]]

The HTML editor is only for use by those people who have a working knowledge of web design, and the ability to parse and edit code for the purposes of formatting page and post content.

[[File:VisualEditor_2.png|thumb|none|200px|The WordPress HTML Editor]]

==Page Editing==
Project pages are designed to display not only static information about the project (i.e., Purpose, Overview, Partners, etc.) but also a dynamic list of the most recent posts about the project. To accomplish this they employ a special WordPress function called a ‘Loop.’

Due to a known bug in the WordPress editor, because of the presence of the Loop, any switching between the HTML view and the Visual Editor will remove any formatting applied to the static text. For this reason, researchers and students do not have permission to edit pages, but may bring any errors or changes to the attention to the relevant Research Coordinator or Project Manager.

==Post editing/creation==
Posts may be created by any and all staff. There are several things to keep in mind when creating a post.

===Title===
The title of your post is important as it will be the guide to our readers as to the content. Try to think of a title that is both descriptive and catchy. For example:
* Post Title: “World Health Organization report on telemedicine prepared by eHealth Strategy Office finally released!"

===Main post content===
Give consideration to your writing, and keep in mind that writing for the web is different than report or academic writing. Seriousness is OK, but formality is not as necessary and may discourage casual users from reading your whole post. Try to write in shorter sentences and keep to one main idea per paragraph. For more insight into writing for the web, check out usability guru Jacob Nielsen’s page here: http://www.useit.com/alertbox/9710a.html

[[File:KitchenSink_2.png|thumb|none|400px|The WordPress "Kitchen Sink"]]

* If you use another program outside Wordpress, such as Microsoft Word, to draft your posts, please keep in mind that formatting errors may occur when you copy and paste them into Wordpress, particularly with lists and headings. To combat this there are buttons in the editor’s Kitchen Sink to “Paste from Word” or “Paste as Plain Text.”
* If you include information about external resources available on the web, you must include a link to that item, or a relevant informational page about it. Whenever possible, avoid linking directly to PDF documents; if there is no suitable alternative webpage, include a note in the text that your link will send the user to a PDF. (e.g., “The report is available here in PDF.)
* Please, always use spell check before posting!

===Permalink===
The ‘permalink’ appears just below the title of the post after a few seconds. Wordpress allows us to customize your posts URL using this field. Please try to shorten your URL to three or four words, or a suitably brief form of your title. For example:
* Post Title: “World Health Organization report on telemedicine prepared by eHealth Strategy Office finally released!”

[[File:Permalink_1.png|thumb|none|300px|Default Permalink]]
* Unedited (auto) permalink: world-health-organization-report-on-telemedicine-prepared…

[[File:Permalink_2.png|thumb|none|300px|Editing a Permalink]]
* Edited permalink: who-telemedicine-report

===Categories===
[[File:categories_1.png|thumb|none|200px|Selecting Categories]]
Each post must belong to at least one category, and may be assigned to more than one at the discretion of the post author. New categories will be created with discretion, as necessary, through consultation with the BWG. Some general considerations for post authors:
* If your post is related to an internal project, course or educational activity, please select both the relevant specific category (e.g., eMentoring) AND the general parent category above it (e.g. Projects).
* If your post is an announcement of an upcoming event, in addition to selecting any relevant project category as above, also add it to the Events category. This category should be used for internal office events only (e.g. eHIPP).
* If your post is of more general interest, such as a report or review or website, please select a non-project category such as Research, Technology, or Education.

===Tags===
[[File:tags_2.png|thumb|none|200px|Adding tags]]
Tags are keywords or phrases that provide additional context for the reader and site users, to be used in conjunction with Categories. Over time, similar tags on posts will be used to sort and display related content on our site.
* Tags may be created on the fly, but if there are pre-existing tags that relate to your post, try to use them. For example, if possible, choose Community Engagement instead of creating a new tag called Community Partnerships. A list of commonly used tags can be viewed by clicking “Choose from the most used tags.”
* Try to use 3-5 tags per post.

===Featured Image===
[[File:FeaturedImage_2.png|thumb|none|200px|Set Featured Image]]
Every post should have at least one image included in the body of the post. This is to ensure that there is a visual hook that draws readers into the content. The primary image that is included in the post should also be designated the “featured image.”
* If you have not yet uploaded an image, select “Add an Image” above the text editor. When you upload or select the image you would like to use, before clicking “Insert Into Post,” select “Use as featured image.”
* If the image has already been inserted into the post, select “Set Featured Image” in the Featured Image widget on the right hand side of the page, below the categories and tags. Select “Gallery” and find the image you have used in your post. Click “Show” and then select “Use as featured image.”

[[Category:EHealth Strategy Office]]

Documentation:EHealth Strategy Office/Staff Documentation/Social Media

2012-06-11T23:16:51Z

Danhooker: updated policy

{{Template:Documentation-eHealth_Strategy_Office}}__TOC__
'''THIS IS A DRAFT DOCUMENT'''
==Introduction==
===Purpose and Scope===
These guidelines are designed to address some common issues with using social media in a communications, community engagement, or other project-related context. They are intended to be useful to all staff, by providing a foundation for appropriate use to be consulted when planning a social media initiative for your project or when thinking about particiapting in the Office's various social media profiles. They will also include helpful links and templates that will be important for the people on the ground running social media initiatives day-to-day.

These guidelines do not address basic information about social media (such as how to create accounts and minute differences between platforms) but they should address some concerns about engagement and will hopefully enocurage critical thinking about the best ways to use social media for the improvement of project communications. If you would like suggestions about how to learn more of the basics of social media, please contact Daniel Hooker who will be able to provide you with some recommendations for foundational resources.

===Definitions===
At its most practical, social media is a set of web-based tools that enable fast and easy ways of communicating to large groups of people. These are tools like blogs, Facebook, Twitter and YouTube. They enable their users to create or upload content, and then share that content with others quickly and easily.

More philosophically, social media represent a way of thinking about the people you interact with, and about the things we do on a daily basis both at work and at home, that encourages openness, transparency and a collaborative spirit. However, we are not all used to, or comfortable with, sharing our work with a large audience ''at all'', much less before it is polished, finished and sent to the printer.

That being said, the benefits of interacting openly with a large network of supporters has started to be seen as outweighing many of the concerns around changing our work habits. And many organizations in health care including the eHealth Strategy Office have begun to participate in these channels in order to share their work and expertise with others directly -- well before any publication is released.

===Social Media in Health and Medicine===
Most areas of health care have started, in some way, to become involved with social media.

'''Professionals''' in many areas of business and practice use social media tools to create and interact with an online network of their peers, similar to an electronic Community of Practice (eCoP). Doctors, nurses and other health professionals are no different. There are many health professionals who connect daily with their peers to discuss literature, conferences, changes in professional practice, and anonymized cases. Medical students and residents are also blogging and tweeting about their educational process, and potentially making valuable connections to leaders in their field.

'''Non-profit organizations''' were among the first to adopt social media tools for marketing and promotional activity, because dontaions and fundraising are central to their ability to conitnuing their work. But they do not use social media simply to solicit money from their audience, quite the opposite in fact. More typically, non-profits and research groups use social media to cultivate relationships with their communities in a supportive and convenient way. Perhaps support and donations result from this relationship, but it is the community engagement and health promotion that is of primary importance.

'''Hospitals and clinics''' have also adopted social media for reaching out to patients, because understanding patient experience in their facilities is central to being able to improve their services and facilities.

'''Journals and news outlets''' also use social media to spread their content, and to make accessing their published work easier for those interested.

==Policies==
===eHealth Strategy Office Policy Statement===
Using social media for eHealth Strategy Office on behalf of the eHealth Strategy Office and its projects and promotions is encouraged. If you are a project manager, blogging about your project via the eHealth website is mandatory, and you are also required to plan communications on your project, which may include social media. However, if you are running a project-based social media profile, or if you identify as an eHealth Strategy Office staff member on any social media, you are expected to follow the Social Media Guidelines as available on the eHealth Strategy Documentation wiki page.

You are also required to notify the Marketing and Communications Coordinator of any new Office or project-related social media program. Social media initiatives require planning like any other element of project management and the Marketing and Communications Coordinator can help to ensure issues such as governance and sustainability of social media initiatives are integrated into any project plan or strategic document from the start of the project.

===University Policy===
UBC is currently drafting social media guidelines for all university-related social media profiles, which will include us. As such, you should review the UBC [[Documentation:UBC Social Media Handbook|Social Media Handbook]] until the final guidelines have been produced, at which time they will serve as a foundation on which we will base our own unit guidelines.

==Social Media Guidelines==
===Why we share===
*Transparency
*Knowledge Translation and Exchange
*Community Engagement
''More detail here''
===General Principles===
*'''Be yourself'''. One of the reasons social media is so unique is that it allows your community to speak with a real person with a point of view. If you are speaking from a project-based account try to identify who's running the account in the bio (see [https://twitter.com/#!/ehealthstrategy @ehealthstrategy] for an example of this). It's OK to voice opinions, but state them as such, not as fact.
*'''Be professional.''' Though you have license to speak as yourself and share your opinions, remember that when you identify as an eHealth Strategy Office employee, you are speaking as an ambassador of our group and of UBC Faculty of Medicine.
*'''Be available'''. Social media is about engagement. If someone asks you a question, do your best to answer quickly. If someone retweets or shares your content, thank them or follow up some other way. Provide a link to your bio, your email address or other contact information if you can.
*'''Be accountable'''. If you make a mistake, misquote, or misinterpret something, acknowledge it or apologize if necessary.
*'''Support your network.''' If you see other eHealth or FOM profiles (or anyone important to you, for that matter) asking for help, do what you can to support their initiatives. You never know when you'll need help in return. Building a strong network within our Office and the University/FOM community will be beneficial for everyone.
*'''Keep internal communcations internal.''' Make sure you don't quote emails or release sensitive project documents without getting permission from the project team first. Ideally, you will have established a communications plan from the beginning of the project that specifies what type of information can be shared about the project publicly. If this hasn't been done, consider doing it now.
*'''Integrate.''' Remember that social media is just one piece of your project's communications and community engagement plan. Align your messages across the whole project.

===Code of Conduct===
*If you are participating in social media under your own name on behalf of your project or the eHealth Strategy Office, make sure your position as a representative of your project is made clear to your audience unless there are exceptional circumstances, such as a potential threat to personal security. Never give out personal details like home address and phone numbers.
*Always make sure to clarify whether you are participating in an official or a personal capacity. '''''list how does one actually go about doing this?'''''
*Be aware that participating online may attract media interest in you as an individual, so proceed with care regardless of what capacity you are acting in.
*Participate on social media in the same way as you would in other public forums or conferences. People are there to hear you, but in return you are expected to act with respect and to add value to the interaction.
*Remember that participation online results in your comments being permanently available and open to being republished in other media.
*If you’re using social media in a personal capacity, you should not identify your employer when doing so would bring your employer into disrepute

If you have any doubts, take advice from your supervisor, project manager or the Marketing and Communications Coordinator.

===Communications Planning===
All projects that will communicate their results and work processes should undertake a communications planning process as an early part of the project management lifecycle. This process should eventually involve all types of stakeholders, and should be coordinated initially with the Marketing and Communications Coordinator.

Should attempt to address
*Target Audience(s)
*Stakeholders and partners
*Key Messages about your project (vision statement, elevator speech). You will use these to refer to when writing reports, blog posts and other social media posts.
*What is appropriate to share about your project
*Goals and ways to gauge success

===Inter-office coordination===
Social media initiatives benefit greatly from coordination and teamwork. In order to maximize the effectiveness and amplification of all the social media initiatives of the office, please notify the Marketing and Communications Coordinator when embarking on a new social media initiative.

As a general rule, projects will operate on social media through existing eHealth Strategy Office accounts, unless a need for creating new project-based accounts is called for. Using current channels takes advantage of the audience and community already established by the Office, and helps ensure that accounts are not orphaned or abandoned after the project lifecycle completes or as staffing and funding levels change.

Coordinating your project's social media efforts with those of the entire Office should be considered in your online communications plan.

==Support, Training and Inspiration==
'''For a general introduction and training in specific social media tools, try checking out the Mayo Clinic's [http://social-media-university-global.org/curriculum/ Social Media University, Global]'''.

Here is a list of eHealth Strategy Office's currently [[/active channels/]]

===Tool Training===
These links will become active as training information is developed.
*[[Documentation:EHealth_Strategy_Office/Tech_Support/Blogging_Best_Practices|Blogging Best Practices]]
*Twitter
*Facebook
*YouTube
*Other social channels?
*Communications Planning resources

==Acknowledgements==
Some portions of these guidelines adapted from: http://webstandards.govt.nz/guides/strategy-and-operations/social-media/high-level-guidance/

Other inspirations from:
*http://www.cma.ca/socialmedia
*http://www.razorfish.com/img/content/RazorfishSIMguideWebJuly2009.pdf
*http://www.ibm.com/blogs/zz/en/guidelines.html
*http://www.intel.com/content/www/us/en/legal/intel-social-media-guidelines.html

'''THIS IS A DRAFT DOCUMENT'''

[[Category:EHealth Strategy Office]]

Documentation:EHealth Strategy Office/Staff Documentation/Social Media

2012-05-30T15:11:19Z

Danhooker:

{{Template:Documentation-eHealth_Strategy_Office}}__TOC__
'''THIS IS A DRAFT DOCUMENT'''
==Introduction==
===Purpose and Scope===
These guidelines are designed to address some common issues with using social media in a communications, community engagement, or other project-related context. They are intended to be useful to all staff, by providing a foundation for appropriate use to be consulted when planning a social media initiative for your project or when thinking about particiapting in the Office's various social media profiles. They will also include helpful links and templates that will be important for the people on the ground running social media initiatives day-to-day.

These guidelines do not address basic information about social media (such as how to create accounts and minute differences between platforms) but they should address some concerns about engagement and will hopefully enocurage critical thinking about the best ways to use social media for the improvement of project communications. If you would like suggestions about how to learn more of the basics of social media, please contact Daniel Hooker who will be able to provide you with some recommendations for foundational resources.

===Definitions===
At its most practical, social media is a set of web-based tools that enable fast and easy ways of communicating to large groups of people. These are tools like blogs, Facebook, Twitter and YouTube. They enable their users to create or upload content, and then share that content with others quickly and easily.

More philosophically, social media represent a way of thinking about the people you interact with, and about the things we do on a daily basis both at work and at home, that encourages openness, transparency and a collaborative spirit. However, we are not all used to, or comfortable with, sharing our work with a large audience ''at all'', much less before it is polished, finished and sent to the printer.

That being said, the benefits of interacting openly with a large network of supporters has started to be seen as outweighing many of the concerns around changing our work habits. And many organizations in health care including the eHealth Strategy Office have begun to participate in these channels in order to share their work and expertise with others directly -- well before any publication is released.

===Social Media in Health and Medicine===
Most areas of health care have started, in some way, to become involved with social media.

'''Professionals''' in many areas of business and practice use social media tools to create and interact with an online network of their peers, similar to an electronic Community of Practice (eCoP). Doctors, nurses and other health professionals are no different. There are many health professionals who connect daily with their peers to discuss literature, conferences, changes in professional practice, and anonymized cases. Medical students and residents are also blogging and tweeting about their educational process, and potentially making valuable connections to leaders in their field.

'''Non-profit organizations''' were among the first to adopt social media tools for marketing and promotional activity, because dontaions and fundraising are central to their ability to conitnuing their work. But they do not use social media simply to solicit money from their audience, quite the opposite in fact. More typically, non-profits and research groups use social media to cultivate relationships with their communities in a supportive and convenient way. Perhaps support and donations result from this relationship, but it is the community engagement and health promotion that is of primary importance.

'''Hospitals and clinics''' have also adopted social media for reaching out to patients, because understanding patient experience in their facilities is central to being able to improve their services and facilities.

'''Journals and news outlets''' also use social media to spread their content, and to make accessing their published work easier for those interested.

==Policies==
===eHealth Strategy Office Policy Statement===
Using social media for eHealth Strategy Office on behalf of the eHealth Strategy Office and its projects and promotions is encouraged. However, if you are running a project-based social media profile, or if you identify as an eHealth Strategy Office staff member on any social media, you are expected to follow the Social Media Guidelines as available on the eHealth Strategy Documentation wiki page. The Marketing and Communications Coordinator should be notified of any new Office or project-related social media program. Social media initiatives require planning like any other element of project management. Issues such as governance and sustainability of social media initiatives must be integrated into any project plan or strategic document from the start of the project.

===University Policy===
UBC is currently drafting social media guidelines for all university-related social media profiles, which will include us. As such, you should review the UBC [[Documentation:UBC Social Media Handbook|Social Media Handbook]] until the final guidelines have been produced, at which time they will serve as a foundation on which we will base our own unit guidelines.

==Social Media Guidelines==
===Why we share===
*Transparency
*Knowledge Translation and Exchange
*Community Engagement
''More detail here''
===General Principles===
*'''Be yourself'''. One of the reasons social media is so unique is that it allows your community to speak with a real person with a point of view. If you are speaking from a project-based account try to identify who's running the account in the bio (see [https://twitter.com/#!/ehealthstrategy @ehealthstrategy] for an example of this). It's OK to voice opinions, but state them as such, not as fact.
*'''Be professional.''' Though you have license to speak as yourself and share your opinions, remember that when you identify as an eHealth Strategy Office employee, you are speaking as an ambassador of our group and of UBC Faculty of Medicine.
*'''Be available'''. Social media is about engagement. If someone asks you a question, do your best to answer quickly. If someone retweets or shares your content, thank them or follow up some other way. Provide a link to your bio, your email address or other contact information if you can.
*'''Be accountable'''. If you make a mistake, misquote, or misinterpret something, acknowledge it or apologize if necessary.
*'''Support your network.''' If you see other eHealth or FOM profiles (or anyone important to you, for that matter) asking for help, do what you can to support their initiatives. You never know when you'll need help in return. Building a strong network within our Office and the University/FOM community will be beneficial for everyone.
*'''Keep internal communcations internal.''' Make sure you don't quote emails or release sensitive project documents without getting permission from the project team first. Ideally, you will have established a communications plan from the beginning of the project that specifies what type of information can be shared about the project publicly. If this hasn't been done, consider doing it now.
*'''Integrate.''' Remember that social media is just one piece of your project's communications and community engagement plan. Align your messages across the whole project.

===Code of Conduct===
*If you are participating in social media under your own name on behalf of your project or the eHealth Strategy Office, make sure your position as a representative of your project is made clear to your audience unless there are exceptional circumstances, such as a potential threat to personal security. Never give out personal details like home address and phone numbers.
*Always make sure to clarify whether you are participating in an official or a personal capacity. '''''list how does one actually go about doing this?'''''
*Be aware that participating online may attract media interest in you as an individual, so proceed with care regardless of what capacity you are acting in.
*Participate on social media in the same way as you would in other public forums or conferences. People are there to hear you, but in return you are expected to act with respect and to add value to the interaction.
*Remember that participation online results in your comments being permanently available and open to being republished in other media.
*If you’re using social media in a personal capacity, you should not identify your employer when doing so would bring your employer into disrepute

If you have any doubts, take advice from your supervisor, project manager or the Marketing and Communications Coordinator.

===Communications Planning===
All projects that will communicate their results and work processes should undertake a communications planning process as an early part of the project management lifecycle. This process should eventually involve all types of stakeholders, and should be coordinated initially with the Marketing and Communications Coordinator.

Should attempt to address
*Target Audience(s)
*Stakeholders and partners
*Key Messages about your project (vision statement, elevator speech). You will use these to refer to when writing reports, blog posts and other social media posts.
*What is appropriate to share about your project
*Goals and ways to gauge success

===Inter-office coordination===
Social media initiatives benefit greatly from coordination and teamwork. In order to maximize the effectiveness and amplification of all the social media initiatives of the office, please notify the Marketing and Communications Coordinator when embarking on a new social media initiative.

As a general rule, projects will operate on social media through existing eHealth Strategy Office accounts, unless a need for creating new project-based accounts is called for. Using current channels takes advantage of the audience and community already established by the Office, and helps ensure that accounts are not orphaned or abandoned after the project lifecycle completes or as staffing and funding levels change.

Coordinating your project's social media efforts with those of the entire Office should be considered in your online communications plan.

==Support, Training and Inspiration==
'''For a general introduction and training in specific social media tools, try checking out the Mayo Clinic's [http://social-media-university-global.org/curriculum/ Social Media University, Global]'''.

Here is a list of eHealth Strategy Office's currently [[/active channels/]]

===Tool Training===
These links will become active as training information is developed.
*[[Documentation:EHealth_Strategy_Office/Tech_Support/Blogging_Best_Practices|Blogging Best Practices]]
*Twitter
*Facebook
*YouTube
*Other social channels?
*Communications Planning resources

==Acknowledgements==
Some portions of these guidelines adapted from: http://webstandards.govt.nz/guides/strategy-and-operations/social-media/high-level-guidance/

Other inspirations from:
*http://www.cma.ca/socialmedia
*http://www.razorfish.com/img/content/RazorfishSIMguideWebJuly2009.pdf
*http://www.ibm.com/blogs/zz/en/guidelines.html
*http://www.intel.com/content/www/us/en/legal/intel-social-media-guidelines.html

'''THIS IS A DRAFT DOCUMENT'''

[[Category:EHealth Strategy Office]]

Documentation:EHealth Strategy Office/Staff Documentation/Social Media

2012-05-30T15:10:53Z

Danhooker:

{{Template:Documentation-eHealth_Strategy_Office}}__TOC__
'''THIS IS A DRAFT DOCUMENT'''
==Introduction==
===Purpose and Scope===
These guidelines are designed to address some common issues with using social media in a communications, community engagement, or other project-related context. They are intended to be useful to all staff, by providing a foundation for appropriate use to be consulted when planning a social media initiative for your project or when thinking about particiapting in the Office's various social media profiles. They will also include helpful links and templates that will be important for the people on the ground running social media initiatives day-to-day.

These guidelines do not address basic information about social media (such as how to create accounts and minute differences between platforms) but they should address some concerns about engagement and will hopefully enocurage critical thinking about the best ways to use social media for the improvement of project communications. If you would like suggestions about how to learn more of the basics of social media, please contact Daniel Hooker who will be able to provide you with some recommendations for foundational resources.

===Definitions===
At its most practical, social media is a set of web-based tools that enable fast and easy ways of communicating to large groups of people. These are tools like blogs, Facebook, Twitter and YouTube. They enable their users to create or upload content, and then share that content with others quickly and easily.

More philosophically, social media represent a way of thinking about the people you interact with, and about the things we do on a daily basis both at work and at home, that encourages openness, transparency and a collaborative spirit. However, we are not all used to, or comfortable with, sharing our work with a large audience ''at all'', much less before it is polished, finished and sent to the printer.

That being said, the benefits of interacting openly with a large network of supporters has started to be seen as outweighing many of the concerns around changing our work habits. And many organizations in health care including the eHealth Strategy Office have begun to participate in these channels in order to share their work and expertise with others directly -- well before any publication is released.

===Social Media in Health and Medicine===
Most areas of health care have started, in some way, to become involved with social media.

'''Professionals''' in many areas of business and practice use social media tools to create and interact with an online network of their peers, similar to an electronic Community of Practice (eCoP). Doctors, nurses and other health professionals are no different. There are many health professionals who connect daily with their peers to discuss literature, conferences, changes in professional practice, and anonymized cases. Medical students and residents are also blogging and tweeting about their educational process, and potentially making valuable connections to leaders in their field.

'''Non-profit organizations''' were among the first to adopt social media tools for marketing and promotional activity, because dontaions and fundraising are central to their ability to conitnuing their work. But they do not use social media simply to solicit money from their audience, quite the opposite in fact. More typically, non-profits and research groups use social media to cultivate relationships with their communities in a supportive and convenient way. Perhaps support and donations result from this relationship, but it is the community engagement and health promotion that is of primary importance.

'''Hospitals and clinics''' have also adopted social media for reaching out to patients, because understanding patient experience in their facilities is central to being able to improve their services and facilities.

'''Journals and news outlets''' also use social media to spread their content, and to make accessing their published work easier for those interested.

==Policies==
===eHealth Strategy Office Policy Statement===
Using social media for eHealth Strategy Office on behalf of the eHealth Strategy Office and its projects and promotions is encouraged. However, if you are running a project-based social media profile, or if you identify as an eHealth Strategy Office staff member on any social media, you are expected to follow the Social Media Guidelines as available on the eHealth Strategy Documentation wiki page. The Marketing and Communications Coordinator should be notified of any new Office or project-related social media program. Social media initiatives require planning like any other element of project management. Issues such as governance and sustainability of social media initiatives must be integrated into any project plan or strategic document from the start of the project.

===University Policy===
UBC is currently drafting social media guidelines for all university-related social media profiles, which will include us. As such, you should review the UBC [[Documentation:UBC Social Media Handbook|Social Media Handbook]] until the final guidelines have been produced, at which time they will serve as a foundation on which we will base our own unit guidelines.

==Social Media Guidelines==
===Why we share===
*Transparency
*Knowledge Translation and Exchange
*Community Engagement
''More detail here''
===General Principles===
*'''Be yourself'''. One of the reasons social media is so unique is that it allows your community to speak with a real person with a point of view. If you are speaking from a project-based account try to identify who's running the account in the bio (see [https://twitter.com/#!/ehealthstrategy @ehealthstrategy] for an example of this). It's OK to voice opinions, but state them as such, not as fact.
*'''Be professional.''' Though you have license to speak as yourself and share your opinions, remember that when you identify as an eHealth Strategy Office employee, you are speaking as an ambassador of our group and of UBC Faculty of Medicine.
*'''Be available'''. Social media is about engagement. If someone asks you a question, do your best to answer quickly. If someone retweets or shares your content, thank them or follow up some other way. Provide a link to your bio, your email address or other contact information if you can.
*'''Be accountable'''. If you make a mistake, misquote, or misinterpret something, acknowledge it or apologize if necessary.
*'''Support your network.''' If you see other eHealth or FOM profiles (or anyone important to you, for that matter) asking for help, do what you can to support their initiatives. You never know when you'll need help in return. Building a strong network within our Office and the University/FOM community will be beneficial for everyone.
*'''Keep internal communcations internal.''' Make sure you don't quote emails or release sensitive project documents without getting permission from the project team first. Ideally, you will have established a communications plan from the beginning of the project that specifies what type of information can be shared about the project publicly. If this hasn't been done, consider doing it now.
*'''Integrate.''' Remember that social media is just one piece of your project's communications and community engagement plan. Align your messages across the whole project.

===Code of Conduct===
*If you are participating in social media under your own name on behalf of your project or the eHealth Strategy Office, make sure your position as a representative of your project is made clear to your audience unless there are exceptional circumstances, such as a potential threat to personal security. Never give out personal details like home address and phone numbers.
*Always make sure to clarify whether you are participating in an official or a personal capacity. '''''list how does one actually go about doing this?'''''
*Be aware that participating online may attract media interest in you as an individual, so proceed with care regardless of what capacity you are acting in.
*Participate on social media in the same way as you would in other public forums or conferences. People are there to hear you, but in return you are expected to act with respect and to add value to the interaction.
*Remember that participation online results in your comments being permanently available and open to being republished in other media.
*If you’re using social media in a personal capacity, you should not identify your employer when doing so would bring your employer into disrepute

If you have any doubts, take advice from your supervisor, project manager or the Marketing and Communications Coordinator.

===Communications Planning===
All projects that will communicate their results and work processes should undertake a communications planning process as an early part of the project management lifecycle. This process should eventually involve all types of stakeholders, and should be coordinated initially with the Marketing and Communications Coordinator.

Should attempt to address
*Target Audience(s)
*Stakeholders and partners
*Key Messages about your project (vision statement, elevator speech). You will use these to refer to when writing reports, blog posts and other social media posts.
*What is appropriate to share about your project
*Goals and ways to gauge success

===Inter-office coordination===
Social media initiatives benefit greatly from coordination and teamwork. In order to maximize the effectiveness and amplification of all the social media initiatives of the office, please notify the Marketing and Communications Coordinator when embarking on a new social media initiative.

As a general rule, projects will operate on social media through existing eHealth Strategy Office accounts, unless a need for creating new project-based accounts is called for. Using current channels takes advantage of the audience and community already established by the Office, and helps ensure that accounts are not orphaned or abandoned after the project lifecycle completes or as staffing and funding levels change.

Coordinating your project's social media efforts with those of the entire Office should be considered in your online communications plan.

==Support, Training and Inspiration==
For general introduction and training in specific social media tools, try checking out the '''Mayo Clinic's [http://social-media-university-global.org/curriculum/ Social Media University, Global]'''.

Here is a list of eHealth Strategy Office's currently [[/active channels/]]

===Tool Training===
These links will become active as training information is developed.
*[[Documentation:EHealth_Strategy_Office/Tech_Support/Blogging_Best_Practices|Blogging Best Practices]]
*Twitter
*Facebook
*YouTube
*Other social channels?
*Communications Planning resources

==Acknowledgements==
Some portions of these guidelines adapted from: http://webstandards.govt.nz/guides/strategy-and-operations/social-media/high-level-guidance/

Other inspirations from:
*http://www.cma.ca/socialmedia
*http://www.razorfish.com/img/content/RazorfishSIMguideWebJuly2009.pdf
*http://www.ibm.com/blogs/zz/en/guidelines.html
*http://www.intel.com/content/www/us/en/legal/intel-social-media-guidelines.html

'''THIS IS A DRAFT DOCUMENT'''

[[Category:EHealth Strategy Office]]

Documentation:EHealth Strategy Office/Tech Support/Website/Bio Templates

2012-05-23T16:49:44Z

Danhooker:

Documentation:EHealth Strategy Office/Tech Support/Website/Bio Templates

2012-05-23T16:49:21Z

Danhooker:

{{Template:Documentation-eHealth_Strategy_Office}}
{{Template:Documentation-eHealth_Website_Help}}
__TOC__
==General Guidelines==
All biographies should be somewhat consistent in design. In general, they should include your
*job title. '''Please style this as a "Heading 3".'''
*email address
*phone number
*brief synopsis of your work experience.

<gallery>
File:Bio_1.png|Visual Editor of bio
File:Bio_2.png|HTML view of bio
File:Bio_3.png|Completed bio
</gallery>

Optional elements include a photo, CV, publications list, etc etc

==Photo==
If you add a photo to your page, try to align it to the right. This usually helps the text formatting to display in a readable way. That being said, this is only a rule of thumb, and should not be considered a hard-and-fast rule if you think your photo looks better in a different position.

==Recent Posts by you==
You may choose to display a loop of recent posts that you have authored on the site. If you are comfortable with WordPress and HTML, the code to insert this loop is as follows:

<pre><div id="related-posts">
<h2 class="related-posts-label">'Your Name's' Recent Posts</h2>
[loop query="author_name=user_name&posts_per_page=3" view="archive"]
<h3 class="older-posts"><a href="/author/user_name/">View all 'Your Name's' posts...</a></h3>
</div>
</pre>

Adding this loop used to ruin the formatting of some pages, but it doesn't seem to be causing this issue anymore. If you add this function to your bio, and afterward the formatting doesn't seem to be working correctly, see the page on HTML basics to add your <nowiki><p></nowiki> tags back in, or notify a member of the branding working group who should be able to fix it for you.

[[Category:EHealth Strategy Office]]

Documentation:EHealth Strategy Office/Tech Support/Website/Bio Templates

2012-05-23T16:49:02Z

Danhooker:

{{Template:Documentation-eHealth_Strategy_Office}}
{{Template:Documentation-eHealth_Website_Help}}
__TOC__
==General Guidelines==
All biographies should be somewhat consistent in design. In general, they should include your
*job title. '''Please style this as a "Heading 3".'''
*email address
*phone number
*brief synopsis of your work experience.

<gallery>
File:Bio_1.png|Visual Editor of bio
File:Bio_2.png|HTML view of bio
File:Bio_3.png|Completed bio
</gallery>

Optional elements include a photo, CV, publications list, or a recent posts "loop" (see below).

==Photo==
If you add a photo to your page, try to align it to the right. This usually helps the text formatting to display in a readable way. That being said, this is only a rule of thumb, and should not be considered a hard-and-fast rule if you think your photo looks better in a different position.

==Recent Posts by you==
You may choose to display a loop of recent posts that you have authored on the site. If you are comfortable with WordPress and HTML, the code to insert this loop is as follows:

<pre><div id="related-posts">
<h2 class="related-posts-label">'Your Name's' Recent Posts</h2>
[loop query="author_name=user_name&posts_per_page=3" view="archive"]
<h3 class="older-posts"><a href="/author/user_name/">View all 'Your Name's' posts...</a></h3>
</div>
</pre>

Adding this loop used to ruin the formatting of some pages, but it doesn't seem to be causing this issue anymore. If you add this function to your bio, and afterward the formatting doesn't seem to be working correctly, see the page on HTML basics to add your <nowiki><p></nowiki> tags back in, or notify a member of the branding working group who should be able to fix it for you.

[[Category:EHealth Strategy Office]]

Template:Documentation-eHealth Website Help

2012-05-23T16:48:03Z

Danhooker:

<div class="noembed">
<div style="padding-right:218px; margin: 10px auto; width:355px;">
{| border="2" cellpadding="5" cellspacing="0"
! colspan="2" style="border-width: 1px" | [[Documentation:EHealth_Strategy_Office/Tech_Support/Website|Getting started with the eHealth Strategy Website]]
|-
| style="border-width: 1px 0 1px 1px" |
*[[Documentation:EHealth_Strategy_Office/Tech_Support/Website/Sign_Up|Signing up to the blog]]
*[[Documentation:EHealth_Strategy_Office/Tech_Support/Website/Working With WordPress|Working With Wordpress]]
*[[Documentation:EHealth_Strategy_Office/Tech_Support/Website/HTML Basics|HTML Basics]]
| style="border-width: 1px 1px 1px 0" |
*[[Documentation:EHealth_Strategy_Office/Tech_Support/Website/Bio_Templates|Bio Page Template]]
*[[Documentation:EHealth_Strategy_Office/Tech_Support/Website/Project_Templates|Project Page Template]]
|}
</div>
</div>

Documentation:EHealth Strategy Office

2012-04-24T21:19:26Z

Danhooker:

{{Template:Documentation-eHealth_Strategy_Office}}This is the main page for the eHealth Strategy Office online staff documentation.

__TOC__
==Staff Documentation==
*[[/Staff_Documentation/Orientation_Manual|Orientation Manual]]
*[[/Staff_Documentation/Website_Guidelines|Website Guidelines]]
*[[/Staff_Documentation/Social_Media|Social Media Guidelines]]

==Technical Support==
*[[/Tech_Support/Website|Website]]
*[[/Tech_Support/Social Media|Social Media]]

==Research Toolkit==
*[[/Research_Toolkit/Recommended_Links|Recommended Links]]

==Project Documentation==
*[[/Project_Documentation/HWIP|Healthy Workplace Initiatives Program]]
*[[/Project_Documentation/eHIPP|eHIPP]]

[[Category:EHealth Strategy Office]]

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T22:01:24Z

Danhooker:

__TOC__
'''A rough outline for my presentation on South by Southwest Interactive conference that is happening Thursday April 19. http://ehealth.med.ubc.ca/education/ehipp/''' ''What follows are my personal opinions, not those of UBC nor the eHealth Strategy Office''

{{#widget:SlideShare
|doc=sxsw-120419143502-phpapp01
|width=595
|height=497
}}

==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and how many steps we take is beneficial to our health. But until we start asking the right questions, we can't know.

'''And I don't mean to imply that if academics were in 100% charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention (Links)==
*[http://33charts.com/2010/03/sxsh-and-social-healths-coming-of-age.html Social Health's Coming of Age] - 33 Charts
*[http://www.baratunde.com/ Baratunde Thurston]
*[http://www.caseorganic.com/ Amber Case]
*[http://www.youtube.com/watch?v=9c6W4CCU9M4 Google: Project Glass]
*[http://seattlemamadoc.seattlechildrens.org/ Seattle Mama Doc]
*[http://stories.twitter.com/en/public_health.html Mark Dredze and public health on Twitter] - Twitter Stories
*[http://www.guardian.co.uk/technology/2012/apr/18/tim-berners-lee-google-facebook?CMP=twt_gu Tim Berners-Lee: demand your data from Google and Facebook] - Guardian
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts possibly mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T22:00:22Z

Danhooker:

__TOC__
'''A rough outline for my presentation on South by Southwest Interactive conference that is happening Thursday April 19. http://ehealth.med.ubc.ca/education/ehipp/''' ''What follows are my personal opinions, not those of UBC nor the eHealth Strategy Office''

{{#widget:SlideShare
|doc=12607539
|width=510
|height=426
}}

==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and how many steps we take is beneficial to our health. But until we start asking the right questions, we can't know.

'''And I don't mean to imply that if academics were in 100% charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention (Links)==
*[http://33charts.com/2010/03/sxsh-and-social-healths-coming-of-age.html Social Health's Coming of Age] - 33 Charts
*[http://www.baratunde.com/ Baratunde Thurston]
*[http://www.caseorganic.com/ Amber Case]
*[http://www.youtube.com/watch?v=9c6W4CCU9M4 Google: Project Glass]
*[http://seattlemamadoc.seattlechildrens.org/ Seattle Mama Doc]
*[http://stories.twitter.com/en/public_health.html Mark Dredze and public health on Twitter] - Twitter Stories
*[http://www.guardian.co.uk/technology/2012/apr/18/tim-berners-lee-google-facebook?CMP=twt_gu Tim Berners-Lee: demand your data from Google and Facebook] - Guardian
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts possibly mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T21:38:05Z

Danhooker:

__TOC__
'''A rough outline for my presentation on South by Southwest Interactive conference that is happening Thursday April 19. http://ehealth.med.ubc.ca/education/ehipp/''' ''What follows are my personal opinions, not those of UBC nor the eHealth Strategy Office''

==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and how many steps we take is beneficial to our health. But until we start asking the right questions, we can't know.

'''And I don't mean to imply that if academics were in 100% charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention (Links)==
*[http://33charts.com/2010/03/sxsh-and-social-healths-coming-of-age.html Social Health's Coming of Age] - 33 Charts
*[http://www.baratunde.com/ Baratunde Thurston]
*[http://www.caseorganic.com/ Amber Case]
*[http://www.youtube.com/watch?v=9c6W4CCU9M4 Google: Project Glass]
*[http://seattlemamadoc.seattlechildrens.org/ Seattle Mama Doc]
*[http://stories.twitter.com/en/public_health.html Mark Dredze and public health on Twitter] - Twitter Stories
*[http://www.guardian.co.uk/technology/2012/apr/18/tim-berners-lee-google-facebook?CMP=twt_gu Tim Berners-Lee: demand your data from Google and Facebook] - Guardian
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts possibly mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T19:42:58Z

Danhooker:

__TOC__
'''A rough outline for my presentation on South by Southwest Interactive conference that is happening Thursday April 19. http://ehealth.med.ubc.ca/education/ehipp/''' ''What follows are my personal opinions, not those of UBC nor the eHealth Strategy Office''

==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and how many steps we take is beneficial to our health. But until we start asking the right questions, we can't know.

'''And I don't mean to imply that if academics were in 100% charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://33charts.com/2010/03/sxsh-and-social-healths-coming-of-age.html Social Health's Coming of Age] - 33 Charts
*[http://www.baratunde.com/ Baratunde Thurston]
*[http://www.caseorganic.com/ Amber Case]
*[http://www.youtube.com/watch?v=9c6W4CCU9M4 Google: Project Glass]
*[http://seattlemamadoc.seattlechildrens.org/ Seattle Mama Doc]
*[http://stories.twitter.com/en/public_health.html Mark Dredze and public health on Twitter] - Twitter Stories
*[http://www.guardian.co.uk/technology/2012/apr/18/tim-berners-lee-google-facebook?CMP=twt_gu Tim Berners-Lee: demand your data from Google and Facebook] - Guardian
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts possibly mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T19:39:08Z

Danhooker:

__TOC__
'''A rough outline for my presentation on South by Southwest Interactive conference that is happening Thursday April 19. http://ehealth.med.ubc.ca/education/ehipp/''' ''What follows are my personal opinions, not those of UBC nor the eHealth Strategy Office''
==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and how many steps we take is beneficial to our health. But until we start asking the right questions, we can't know.

'''And I don't mean to imply that if academics were in 100% charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://33charts.com/2010/03/sxsh-and-social-healths-coming-of-age.html Social Health's Coming of Age] - 33 Charts
*[http://www.baratunde.com/ Baratunde Thurston]
*[http://www.caseorganic.com/ Amber Case]
*[http://www.youtube.com/watch?v=9c6W4CCU9M4 Google: Project Glass]
*[http://seattlemamadoc.seattlechildrens.org/ Seattle Mama Doc]
*[http://stories.twitter.com/en/public_health.html Mark Dredze and public health on Twitter] - Twitter Stories
*[http://www.guardian.co.uk/technology/2012/apr/18/tim-berners-lee-google-facebook?CMP=twt_gu Tim Berners-Lee: demand your data from Google and Facebook] - Guardian
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts possibly mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T18:15:58Z

Danhooker:

__TOC__
'''A rough outline for my presentation on South by Southwest Interactive conference that is happening Thursday April 19. http://ehealth.med.ubc.ca/education/ehipp/''' ''What follows are my personal opinions, not those of UBC nor the eHealth Strategy Office''
==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and how many steps we take is beneficial to our health. But until we start asking the right questions, we can't know.

'''And I don't mean to imply that if academics were in 100% charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://33charts.com/2010/03/sxsh-and-social-healths-coming-of-age.html Social Health's Coming of Age] - 33 Charts
*[http://www.youtube.com/watch?v=9c6W4CCU9M4 Google: Project Glass]
*[http://seattlemamadoc.seattlechildrens.org/ Seattle Mama Doc]
*[http://stories.twitter.com/en/public_health.html Mark Dredze and public health on Twitter] - Twitter Stories
*[http://www.guardian.co.uk/technology/2012/apr/18/tim-berners-lee-google-facebook?CMP=twt_gu Tim Berners-Lee: demand your data from Google and Facebook] - Guardian
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts possibly mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T17:31:45Z

Danhooker:

__TOC__
'''A rough outline for my presentation on South by Southwest Interactive conference that is happening Thursday April 19. http://ehealth.med.ubc.ca/education/ehipp/''' ''What follows are my personal opinions, not those of UBC nor the eHealth Strategy Office''
==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and how many steps we take is beneficial to our health. But until we start asking the right questions, we can't know.

'''And I don't mean to imply that if academics were in 100% charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://www.youtube.com/watch?v=9c6W4CCU9M4 Google: Project Glass]
*Seattle Mama Doc
*[http://stories.twitter.com/en/public_health.html Mark Dredze and public health on Twitter] - Twitter Stories
*[http://www.guardian.co.uk/technology/2012/apr/18/tim-berners-lee-google-facebook?CMP=twt_gu Tim Berners-Lee: demand your data from Google and Facebook] - Guardian
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts possibly mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T16:41:52Z

Danhooker:

__TOC__
'''A rough outline for my presentation on South by Southwest Interactive conference that is happening Thursday April 19. http://ehealth.med.ubc.ca/education/ehipp/''' ''What follows are my personal opinions, not those of UBC nor the eHealth Strategy Office''
==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and how many steps we take is beneficial to our health. But until we start asking the right questions, we can't know.

'''And I don't mean to imply that if academics were in 100% charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://www.youtube.com/watch?v=9c6W4CCU9M4 Google: Project Glass]
*[http://www.guardian.co.uk/technology/2012/apr/18/tim-berners-lee-google-facebook?CMP=twt_gu Tim Berners-Lee: demand your data from Google and Facebook] Guardian
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts possibly mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T15:34:59Z

Danhooker:

__TOC__
'''A rough outline for my presentation on South by Southwest Interactive conference that is happening Thursday April 19. http://ehealth.med.ubc.ca/education/ehipp/''' ''What follows are my personal opinions, not those of UBC nor the eHealth Strategy Office''
==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and how many steps we take is beneficial to our health. But until we start asking the right questions, we can't know.

'''And I don't mean to imply that if academics were in 100% charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://www.guardian.co.uk/technology/2012/apr/18/tim-berners-lee-google-facebook?CMP=twt_gu Tim Berners-Lee: demand your data from Google and Facebook] Guardian
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts possibly mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T15:33:34Z

Danhooker:

__TOC__
'''A rough outline for my presentation on South by Southwest Interactive conference that is happening Thursday April 19. http://ehealth.med.ubc.ca/education/ehipp/''' ''What follows are my personal opinions, not those of UBC nor the eHealth Strategy Office''
==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and how many steps we take is beneficial to our health. But until we start asking the right questions, we can't know.

'''And I don't mean to imply that if academics were in 100% charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto
*[http://www.theatlantic.com/technology/archive/2012/04/the-founder-of-the-web-wants-to-protect-you-from-the-web/256093/ Founder of the Web Wants to Protect You From the Web] The Atlantic
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts possibly mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T07:12:32Z

Danhooker:

__TOC__
'''A rough outline for my presentation on South by Southwest Interactive conference that is happening Thursday April 19. http://ehealth.med.ubc.ca/education/ehipp/''' ''What follows are my personal opinions, not those of UBC nor the eHealth Strategy Office''
==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and how many steps we take is beneficial to our health. But until we start asking the right questions, we can't know.

'''And I don't mean to imply that if academics were in 100% charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts possibly mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T06:57:45Z

Danhooker:

__TOC__
'''A rough outline for my presentation on South by Southwest Interactive conference that is happening Thursday April 19. http://ehealth.med.ubc.ca/education/ehipp/'''
==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and how many steps we take is beneficial to our health. But until we start asking the right questions, we can't know.

'''And I don't mean to imply that if academics were in 100% charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts possibly mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T06:57:26Z

Danhooker:

__TOC__
'''A rough outline for my presentation on South by Southwest Interactive conference that is happening Thursday April 19. http://ehealth.med.ubc.ca/education/ehipp/'''
==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and how many steps we take is beneficial to our health. But until we start asking the right questions, we can't know.

'''And I don't mean to imply that if academics were in charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts possibly mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T06:56:07Z

Danhooker:

__TOC__
'''A rough outline for my presentation on South by Southwest Interactive conference that is happening Thursday April 19. http://ehealth.med.ubc.ca/education/ehipp/'''
==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and what we know about ourselves is beneficial to our health. But until we start asking those questions, we aren't going to know.

'''And I don't mean to imply that if academics were in charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts possibly mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T06:55:39Z

Danhooker:

__TOC__
A rough outline for my presentation on South by Southwest Interactive conference that is happening Thursday April 19. http://ehealth.med.ubc.ca/education/ehipp/
==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and what we know about ourselves is beneficial to our health. But until we start asking those questions, we aren't going to know.

'''And I don't mean to imply that if academics were in charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts possibly mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T06:55:03Z

Danhooker:

A rough outline for my presentation on South by Southwest Interactive conference that is happening Thursday April 19. http://ehealth.med.ubc.ca/education/ehipp/

==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and what we know about ourselves is beneficial to our health. But until we start asking those questions, we aren't going to know.

'''And I don't mean to imply that if academics were in charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts possibly mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T06:53:10Z

Danhooker:

Here are some cool links that support my presentation on South by Southwest Interactive conference

==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and what we know about ourselves is beneficial to our health. But until we start asking those questions, we aren't going to know.

'''And I don't mean to imply that if academics were in charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts possibly mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T06:47:58Z

Danhooker:

Here are some cool links that support my presentation on South by Southwest Interactive conference

==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and what we know about ourselves is beneficial to our health. But until we start asking those questions, we aren't going to know.

'''And I don't mean to imply that if academics were in charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts possibly mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T06:47:27Z

Danhooker:

Here are some cool links that support my presentation on South by Southwest Interactive conference

==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and what we know about ourselves is beneficial to our health. But until we start asking those questions, we aren't going to know.

'''And I don't mean to imply that if academics were in charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T06:42:45Z

Danhooker:

Here are some cool links that support my presentation on South by Southwest Interactive conference

==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and what we know about ourselves is beneficial to our health. But until we start asking those questions, we aren't going to know.

'''And I don't mean to imply that if academics were in charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' So if it's a monetary success but is ineffective for health, the academic community can consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

<iframe width="560" height="315" src="http://www.youtube.com/embed/agRc9wy_994" frameborder="0" allowfullscreen></iframe>

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T06:41:30Z

Danhooker:

Here are some cool links that support my presentation on South by Southwest Interactive conference

==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and what we know about ourselves is beneficial to our health. But until we start asking those questions, we aren't going to know.

'''And I don't mean to imply that if academics were in charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' And if it's a monetary success but is ineffective for health, the academic community can help consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Abstracts mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

<iframe width="560" height="315" src="http://www.youtube.com/embed/agRc9wy_994" frameborder="0" allowfullscreen></iframe>

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T06:40:58Z

Danhooker:

Here are some cool links that support my presentation on South by Southwest Interactive conference

==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and what we know about ourselves is beneficial to our health. But until we start asking those questions, we aren't going to know.

'''And I don't mean to imply that if academics were in charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. '''What we need is to see value in knowing whether or not engaging in these behaviours is actually improving our health.''' And if it's a monetary success but is ineffective for health, the academic community can help consult with the business leaders to come up with a joint solution that targets both these needs. And if the tables are turned, then perhaps they can teach us a thing or two about making a desirable product.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

<iframe width="560" height="315" src="http://www.youtube.com/embed/agRc9wy_994" frameborder="0" allowfullscreen></iframe>

===Abstracts mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T06:39:26Z

Danhooker:

Here are some cool links that support my presentation on South by Southwest Interactive conference

==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing is '''these metrics don't tell you whether or not your app is actually improving people's health'''. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? '''What they (the business) want is to sell shoes.''' What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and what we know about ourselves is beneficial to our health. But until we start asking those questions, we aren't going to know.

'''And I don't mean to imply that if academics were in charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. What we need to start discovering is whether or not engaging in these behaviours is actually doing any good for our health. And if it's a monetary success but is ineffective for health, the academic community can help consult with the business leaders to come up with a joint solution that targets both these needs, and if the tables are turned, then vice-versa.

This joint initiative approach is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth Innovation Centre networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

<iframe width="560" height="315" src="http://www.youtube.com/embed/agRc9wy_994" frameborder="0" allowfullscreen></iframe>

===Abstracts mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T06:36:03Z

Danhooker:

Here are some cool links that support my presentation on South by Southwest Interactive conference

==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to '''make data more open, more accessible, and subsequently, more consumable.''' There's a few things that are at stake when we talk about this data:
*'''Scale''' -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*'''Ownership''' -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?
*'''Exchange''' -- data is best when it is able to be shared, and for that we need standards and formats that are understandable across many systems. We feel that here in Canada the same as the US as we all struggle to adopt electronic health records that are truly interoperable. But these new sources of data from apps and websites and wearable devices are further fragmenting our health data, and if we ever want that type of data to be clinically useful, then we're going to have to put a lot more effort into understanding what we're really tracking and how it's being stored and used.

That brings me to the next issue.

===Business Goals vs. Health Outcomes===
The second big issue especially in the health track of this conference is that '''the emphasis on health care as an investment space''' leads to some conflicting goals around why people are making certain products, how willing they may ultimately be to evaluate them rigorously, and whether or not they consider issues like the data issue I describe above. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entrepreneurs, they were keenly aware of design factors including aesthetics and ease of use. Admittedly these are important considerations for any mobile product (and, if you hadn't noticed, everything is a mobile product now), and there is considerable research around aesthetics and people's willingness to use or to like certain products. And you can't have a health app be successful if people don't want to use it, so this is an important part of the battle.

But the thing that these metrics don't tell you is whether or not what your app is doing is actually improving people's health. And here's the rub: to a venture capitalist sinking money into a startup, in the health sector or not, what they want is a (monetary) return on that investment. Preferably one that is substantial and fast. Not all investors have to act this way, and perhaps many do not, but let's consider an easy example for the moment.

Take Reebok's EasyTone shoes. These are shoes that have strange pockets of air in the sole that purportedly make your leg muscles work harder while you walk, thereby toning your legs and backside just by doing your normal walking routine. But can we really say that these do what they claim? Further, do you think Reebok really cares if they work? What they (the business) want is to sell shoes. What we (the academics) want is to know if we can recommend them, which we can't do until we undertake a study. But there may not be motivation to run such a study if the shoes are selling well, at least not one run on Reebok's dime.

To bring this back to the conference, I heard lots of entrepreneurs claim a true desire for helping people with their health through the use of their innovative new product. But '''I heard very little beyond "it's easy to use and people seem to like it" in the way of understanding whether or not their products were successful''' in achieving what should be the goal: improving health.

===Lack of understanding around what is really happening===
So let me push this a bit farther and say that the core of the issue is perhaps this: '''we don't really know what's going on with these new health technologies.''' And this is actually OK in many ways, we have to start somewhere and [http://en.wikipedia.org/wiki/Disruptive_innovation disruptive innovations] often at first appear clunky or misguided, until they sneak in and fill a need you didn't know you had. We may discover that tracking what we eat and what we spend and what we know about ourselves is beneficial to our health. But until we start asking those questions, we aren't going to know.

'''And I don't mean to imply that if academics were in charge that we'd be any better off.''' In an academic context, we would have trouble working within traditional funding structures to launch truly innovative and disruptive products, because there is no evidence that supports their use. So it often takes outside pressure or infiltration of non-traditional stakeholders to come into an industry and break it open. I sense that this is what is happening now that health care is being seen as a "safe" space in which to invest. And in many ways, this is welcome.

But these two cultural poles -- for now let's call them innovation and evidence -- need to begin working together more closely. The iterative and fast-moving "hacker" culture is needed in the health care space to encourage developments that can change quickly as users and patients redefine their needs in what is often unfamiliar contexts (like getting sick, or starting an exercise routine). And design elements are important, too, as the medical reports and systems are often stocked with too much data and too little context. But entrepreneurs and new businesses (and investors) in health must to begin embracing and exploring the idea that there is more to effectiveness in health than sheer numbers of times downloaded. What we need to start discovering is whether or not engaging in these behaviours is actually doing any good for our health. And if it isn't, the academic community can help consult with the business leaders to come up with a joint solution that targets both these needs.

This joint initiative is already underway in some places. Obviously here at our own office we are invested in both technological innovation as well as rigorous evaluation and community engagement strategies. Toronto's eHealth networks and http://humanfactors.ca/ are also undertaking work into how people use new technologies, and what it means for their health.

===Subjectivity, quantification, and health===
I want to leave you with some food for thought around these new apps, and the behaviours that they are encouraging. So many of them are based around tracking -- you track what you eat, how many steps you take, how well you sleep -- and then they feed that data back to you in an engaging way, and try to encourage you to improve. This encouragement may be subtle, it may simply be the presentation of your data compared to a national average, or it may be complex with goals and game elements that offer you rewards for achieving certain milestones within the context of your activity.

But reducing our human health into things that are quantifiable is also to start defining our lives in such a way that we don't allow things that are non-quantifiable to have any value whatsoever. If you can't track it, in other words, it becomes meaningless. In an essay for the New Inquiry, Rob Horning elaborates this idea:

:''By measuring as much of our behavior as possible and converting it into algorithmically analyzable data, we are supposed to learn the truth about what we really value, but this process simply creates an ideological justification for our believing that we want only what can be measured... Gamification systematizes this belief, exploiting the biological reward system to negate other kinds of incentives, other kinds of endeavors besides having one’s button pressed.''

I don't want to go too far into this rabbit hole today, but I think it's really interesting to think about the idea that when we quantify certain things about our health, and when we use those metrics to define ourselves as healthy, we also deny certain other, less quantifiable, things from contributing to our self-conception of health. So this is germaine to health research in general really, but it is particularly apt in a changing environment that has shifting priorities around data collection, business goals and uncertain health benefits.

Keep doing what you're doing, and think about ways that we can be as conscious as possible about new technologies and new opportunities for research that we have, so that we can get the best of both of our worlds and start really improving people's lives.

==Things I should mention==
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://www.seventeen.com/health/fitness/reebok-easy-tone-shoe-aab-020609 A shoe that tones while you walk?] - Seventeen Magazine
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto

==Some Health Startups and Apps==
*Massive Health
*Cake Health
*HealthTap
*Ginger.io
*Pipette
*Startup Health (academy for entrepreneurs)
*Rock Health (startup accelerator)

==Conference Links==
===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''...physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''...psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation... This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

<iframe width="560" height="315" src="http://www.youtube.com/embed/agRc9wy_994" frameborder="0" allowfullscreen></iframe>

===Abstracts mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T05:39:24Z

Danhooker:

Here are some cool links that support my presentation on South by Southwest Interactive conference
==Conference Links==
===Keynotes===
'''How to Read the World''' - Baratunde Thurston - http://schedule.sxsw.com/2012/events/event_IAP992055
:''Politically-active, technology-loving comedian Baratunde Thurston will spark a thought-provoking discussion about the role of technology, comedy and satire in transforming the world around us.''

'''Ambient Location and the Future of the Interface''' - Amber Case - http://schedule.sxsw.com/2012/events/event_IAP992057
:''UX designer Amber Case will share insights from her research in cyborg anthropology and talk about what really makes us human.''

'''Expanding Our Intelligence Without Limit''' - Ray Kurzweil, Lev Grossman - http://schedule.sxsw.com/2012/events/event_IAP992058
:''Legendary visionary Ray Kurzweil will join writer Lev Grossman from TIME Magazine for a mind-expanding keynote conversation about our future''

'''Coding the Next Chapter of American History''' - Jennifer Pahlka - http://schedule.sxsw.com/2012/events/event_IAP992059
:''Join Code for America founder Jennifer Pahlka for a very inspirational keynote address and learn how your geek skills can transform the world for the better.''

===Other Recorded Sessions===
'''Language Technology and the Clinical Narrative''' - Philip Resnick - http://sxsw.com/node/10949
:''Electronic health records have the potential for enormous good, but in order for them to live up to their full potential, information about patients -- their symptoms, diagnoses, allergic reactions, medical backgrounds, family histories -- must take the form of standardized, structured, easy-to-manipulate data. One obvious way to get there is to tightly structure the way that doctors create the medical record. As a result, physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.''

'''Rethinking Gaming Addiction in Psychotherapy''' - Mike Langlois - http://sxsw.com/node/10874
:''Ninety-seven percent of all adolescents in the US play video games, & more than half of the adults in this country play video games regardless of their race or income. The military has discovered that video games decrease symptoms of PTSD in veterans, & with the advent of the iPhone, mobile technology is making social media more prevalent than ever. Despite these numbers, psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation. This is in part due to an age-old mistrust & disdain of technology which has its roots in issues of class & psychology. But despite this, psychotherapy has passed the point where learning about technology is negotiable. This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.''

'''Wireless Wellness: App-tastic or Just Fun & Games?''' - Mark Bertolini, Ina Fried - http://sxsw.com/node/10839
:''Imagine an app that could cut saturated fat from your diet. Or one that could cure gingivitis. Well, while technology has had a big role in making us more sedentary, it also has the potential to make us better informed, healthier and even more fit. In fact, patients are banking on this potential, which is why the AppStore offers more than 7,000 health apps for iPhone users alone. In this 60-min SXSW talk, Ina Fried of Dow Jones' All Things Digital sits down with Aetna Chairman and CEO Mark Bertolini to discuss how people are navigating this new landscape by using technology, especially mobile tech, to manage their health and make better health decisions. Already there are apps for testing eyesight, tracking exercise and even helping diabetics manage their glucose levels. Vast online communities complement these mobile apps by letting patients share, inform, and support one another. But what's next?...''

<iframe width="560" height="315" src="http://www.youtube.com/embed/agRc9wy_994" frameborder="0" allowfullscreen></iframe>

===Abstracts mentioned===
* Crowdsourcing a revolution: how can we fix healthcare? http://schedule.sxsw.com/2012/events/event_IAP11169
* How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
* A Dr, Patient & Insurer Walk into a Social Network http://schedule.sxsw.com/2012/events/event_IAP12497
* Adapting New Technologies for Humanitarian Aid http://schedule.sxsw.com/2012/events/event_IAP8656
* StartUp Health: Transforming Healthcare in America http://schedule.sxsw.com/2012/events/event_IAP11634
* text4baby: The Power of Public-Private Partnership http://schedule.sxsw.com/2012/events/event_IAP10536
* Let’s Play: Motivate Healthy Behavior Using Games http://schedule.sxsw.com/2012/events/event_IAP11179
* The Future of Digital Health http://schedule.sxsw.com/2012/events/event_IAP10591

==Health Startups and Apps==
*Massive Health
*Startup Health
*Cake Health
*HealthTap
*Pipette
*Rock Health (startup accelerator)

==Big Issues==
===Data===
Data is a one of the things that is on everyone's mind now, there are movements across pretty much all research sectors now to make data more open, more accessible, and subsequently, more consumable as well. So there's a few things that are at stake when we talk about this data:
*Scale -- there's never been this much data )potentially) available before. Storing massive data sets and transferring them across networks to researchers is logistically difficult. It is also hard to conceptualize research projects around data sets that are big, and it's especially difficult to translate the findings of lots of data into something that the general public can understand. But there are a lot of resources and new things being developed that help people do just that. (bonus: TedXVancouver talk on [http://youtu.be/-q6aA5qdCzU "making data more human"])
*Ownership -- it's particularly difficult to convince researchers and business owners that they should release data to other people to study. This is a long standing cultural issue around research priority, but it's also sticky in health because of the sensitivity of the data being collected. It needs to be partially protected and partially released. Also, when you download an mHealth app and start tracking your behavior, who do you think should control your information? And what are you comfortable with them doing with it?

===Business Goals vs. Health Outcomes===
The second big issue I saw happening especially in the health track of this conference is that the emphasis on health care as an investment space, leads to some conflicting goals around why people are making certain products, and how willing they may ultimately be to evaluate them rigorously. As one of the few people at the conference hailing from a position of research, I was struck by the lack of emphasis that many of these new companies placed on evaluation of the product. As designers and product engineers and entreprenuers, they were keenly aware of design

==Things I meant to mention==
*[http://www.wired.com/medtech/health/magazine/17-07/lbnp_knowthyself?currentPage=all Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365] - Wired Magazine
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] - The Future Well blog
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] - Frog Design blog
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app] - The Atlantic
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data - http://busterbenson.com/
*[http://thenewinquiry.com/blogs/marginal-utility/meritocracy-and-measurement-myths/ Meritocracy and measurement myths] - The New Inquiry
*[http://www.cassiemcdaniel.com/blog/ Designing Healthcare] - Blog by Cassie McDaniel, who works for http://humanfactors.ca/ at University Health Network in Toronto

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T05:03:11Z

Danhooker:

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T04:46:28Z

Danhooker:

Documentation:EHealth Strategy Office/Project Documentation/eHIPP/april-2012-sxsw

2012-04-19T04:37:32Z

Danhooker: Created page with "Here are some cool links that support my presentation on South by Southwest Interactive conference ==Conference Links== ==Podcasts== Language Technology and the Clinical Narra..."

Here are some cool links that support my presentation on South by Southwest Interactive conference
==Conference Links==
==Podcasts==
Language Technology and the Clinical Narrative - Philip Resnick - http://sxsw.com/node/10949
:Electronic health records have the potential for enormous good, but in order for them to live up to their full potential, information about patients -- their symptoms, diagnoses, allergic reactions, medical backgrounds, family histories -- must take the form of standardized, structured, easy-to-manipulate data. One obvious way to get there is to tightly structure the way that doctors create the medical record. As a result, physicians are under increasing pressure to abandon unrestricted natural language and the clinical narrative, and turn the medical documentation process into a jungle of pull-down menus, checkboxes, and restricted vocabularies. In this presentation I argue that the results could be catastrophic, I make the case for preserving the clinical narrative, and I argue for a practical way out of the dilemma: using natural language processing technology to produce the structured records we need, while still allowing physicians the freedom of unrestricted clinical language.

Rethinking Gaming Addiction in Psychotherapy - Mike Langlois - http://sxsw.com/node/10874
:Ninety-seven percent of all adolescents in the US play video games, & more than half of the adults in this country play video games regardless of their race or income. The military has discovered that video games decrease symptoms of PTSD in veterans, & with the advent of the iPhone, mobile technology is making social media more prevalent than ever. Despite these numbers, psychotherapists & other healthcare providers are reluctant & uncertain how or when to integrate technology into their work. When gaming or technology is mentioned at all, it is only as an addiction or liability, never as a powerful innovation. This is in part due to an age-old mistrust & disdain of technology which has its roots in issues of class & psychology. But despite this, psychotherapy has passed the point where learning about technology is negotiable. This workshop aims to critique the idea of gaming as addiction & further, discuss how understanding and using video games may improve therapeutic outcomes.

==Health Startups and Apps==
*Massive Health
*Startup Health
*Cake Health

==Research==
===Effectiveness===
*[http://thefuturewell.com/2011/02/22/health-apps-are-about-as-effective-as-public-health-ads/ Health apps are about as effective as public health ads] The Future Well blog
*[http://designmind.frogdesign.com/blog/a-month-with-the-other-ted.html one month with a data-driven energy monitor] Frog Design
*[http://www.theatlantic.com/technology/archive/2012/03/the-reason-silicon-valley-hasnt-built-a-good-health-app/254229/ The reason Silicon Valley hasn't built a good health app]
*Buster Benson, great writer and thinker and entrepreneur who does a lot with data http://busterbenson.com/

Documentation:EHealth Strategy Office/Project Documentation/eHIPP

2012-04-19T04:14:14Z

Danhooker: Created page with "April 18, 2012: #sxsw resources"

April 18, 2012: [[/april-2012-sxsw|#sxsw resources]]

Documentation:EHealth Strategy Office/Project Documentation

2012-04-19T04:13:28Z

Danhooker: ehipp

{{Template:Documentation-eHealth_Strategy_Office}}__TOC__
==Project Documentation==
This is a section of the wiki devoted to project materials. You can create your own if you want to!
==Sections==
*[[/HWIP|Healthy Workplace Initiative Program (HWIP)]]
**[[/HWIP/Pedometer Overview/]]
**[[/HWIP/Pedometer Software/]]
*[[/eHIPP|eHIPP Rounds]]

[[Category:EHealth Strategy Office]]

Documentation:EHealth Strategy Office/Staff Documentation/Social Media

2012-03-21T17:59:44Z

Danhooker:

{{Template:Documentation-eHealth_Strategy_Office}}__TOC__
'''THIS IS A DRAFT DOCUMENT'''
==Introduction==
===Purpose and Scope===
These guidelines are designed to address some common issues with using social media in a communications, community engagement, or other project-related context. They are intended to be useful to all staff, by providing a foundation for appropriate use to be consulted when planning a social media initiative for your project or when thinking about particiapting in the Office's various social media profiles. They will also include helpful links and templates that will be important for the people on the ground running social media initiatives day-to-day.

These guidelines do not address basic information about social media (such as how to create accounts and minute differences between platforms) but they should address some concerns about engagement and will hopefully enocurage critical thinking about the best ways to use social media for the improvement of project communications. If you would like suggestions about how to learn more of the basics of social media, please contact Daniel Hooker who will be able to provide you with some recommendations for foundational resources.

===Definitions===
At its most practical, social media is a set of web-based tools that enable fast and easy ways of communicating to large groups of people. These are tools like blogs, Facebook, Twitter and YouTube. They enable their users to create or upload content, and then share that content with others quickly and easily.

More philosophically, social media represent a way of thinking about the people you interact with, and about the things we do on a daily basis both at work and at home, that encourages openness, transparency and a collaborative spirit. However, we are not all used to, or comfortable with, sharing our work with a large audience ''at all'', much less before it is polished, finished and sent to the printer.

That being said, the benefits of interacting openly with a large network of supporters has started to be seen as outweighing many of the concerns around changing our work habits. And many organizations in health care including the eHealth Strategy Office have begun to participate in these channels in order to share their work and expertise with others directly -- well before any publication is released.

===Social Media in Health and Medicine===
Most areas of health care have started, in some way, to become involved with social media.

'''Professionals''' in many areas of business and practice use social media tools to create and interact with an online network of their peers, similar to an electronic Community of Practice (eCoP). Doctors, nurses and other health professionals are no different. There are many health professionals who connect daily with their peers to discuss literature, conferences, changes in professional practice, and anonymized cases. Medical students and residents are also blogging and tweeting about their educational process, and potentially making valuable connections to leaders in their field.

'''Non-profit organizations''' were among the first to adopt social media tools for marketing and promotional activity, because dontaions and fundraising are central to their ability to conitnuing their work. But they do not use social media simply to solicit money from their audience, quite the opposite in fact. More typically, non-profits and research groups use social media to cultivate relationships with their communities in a supportive and convenient way. Perhaps support and donations result from this relationship, but it is the community engagement and health promotion that is of primary importance.

'''Hospitals and clinics''' have also adopted social media for reaching out to patients, because understanding patient experience in their facilities is central to being able to improve their services and facilities.

'''Journals and news outlets''' also use social media to spread their content, and to make accessing their published work easier for those interested.

==Policies==
===eHealth Strategy Office Policy Statement===
Using social media for eHealth Strategy Office on behalf of the eHealth Strategy Office and its projects and promotions is encouraged. However, if you are running a project-based social media profile, or if you identify as an eHealth Strategy Office staff member on any social media, you are expected to follow the Social Media Guidelines as available on the eHealth Strategy Documentation wiki page. The Marketing and Communications Coordinator should be notified of any new Office or project-related social media program. Social media initiatives require planning like any other element of project management. Issues such as governance and sustainability of social media initiatives must be integrated into any project plan or strategic document from the start of the project.

===University Policy===
UBC is currently drafting social media guidelines for all university-related social media profiles, which will include us. As such, you should review the UBC [[Documentation:UBC Social Media Handbook|Social Media Handbook]] until the final guidelines have been produced, at which time they will serve as a foundation on which we will base our own unit guidelines.

==Social Media Guidelines==
===Why we share===
*Transparency
*Knowledge Translation and Exchange
*Community Engagement
''More detail here''
===General Principles===
*'''Be yourself'''. One of the reasons social media is so unique is that it allows your community to speak with a real person with a point of view. If you are speaking from a project-based account try to identify who's running the account in the bio (see [https://twitter.com/#!/ehealthstrategy @ehealthstrategy] for an example of this). It's OK to voice opinions, but state them as such, not as fact.
*'''Be professional.''' Though you have license to speak as yourself and share your opinions, remember that when you identify as an eHealth Strategy Office employee, you are speaking as an ambassador of our group and of UBC Faculty of Medicine.
*'''Be available'''. Social media is about engagement. If someone asks you a question, do your best to answer quickly. If someone retweets or shares your content, thank them or follow up some other way. Provide a link to your bio, your email address or other contact information if you can.
*'''Be accountable'''. If you make a mistake, misquote, or misinterpret something, acknowledge it or apologize if necessary.
*'''Support your network.''' If you see other eHealth or FOM profiles (or anyone important to you, for that matter) asking for help, do what you can to support their initiatives. You never know when you'll need help in return. Building a strong network within our Office and the University/FOM community will be beneficial for everyone.
*'''Keep internal communcations internal.''' Make sure you don't quote emails or release sensitive project documents without getting permission from the project team first. Ideally, you will have established a communications plan from the beginning of the project that specifies what type of information can be shared about the project publicly. If this hasn't been done, consider doing it now.
*'''Integrate.''' Remember that social media is just one piece of your project's communications and community engagement plan. Align your messages across the whole project.

===Code of Conduct===
*If you are participating in social media under your own name on behalf of your project or the eHealth Strategy Office, make sure your position as a representative of your project is made clear to your audience unless there are exceptional circumstances, such as a potential threat to personal security. Never give out personal details like home address and phone numbers.
*Always make sure to clarify whether you are participating in an official or a personal capacity. '''''list how does one actually go about doing this?'''''
*Be aware that participating online may attract media interest in you as an individual, so proceed with care regardless of what capacity you are acting in.
*Participate on social media in the same way as you would in other public forums or conferences. People are there to hear you, but in return you are expected to act with respect and to add value to the interaction.
*Remember that participation online results in your comments being permanently available and open to being republished in other media.
*If you’re using social media in a personal capacity, you should not identify your employer when doing so would bring your employer into disrepute

If you have any doubts, take advice from your supervisor, project manager or the Marketing and Communications Coordinator.

===Communications Planning===
All projects that will communicate their results and work processes should undertake a communications planning process as an early part of the project management lifecycle. This process should eventually involve all types of stakeholders, and should be coordinated initially with the Marketing and Communications Coordinator.

Should attempt to address
*Target Audience(s)
*Stakeholders and partners
*Key Messages about your project (vision statement, elevator speech). You will use these to refer to when writing reports, blog posts and other social media posts.
*What is appropriate to share about your project
*Goals and ways to gauge success

===Inter-office coordination===
Social media initiatives benefit greatly from coordination and teamwork. In order to maximize the effectiveness and amplification of all the social media initiatives of the office, please notify the Marketing and Communications Coordinator when embarking on a new social media initiative.

As a general rule, projects will operate on social media through existing eHealth Strategy Office accounts, unless a need for creating new project-based accounts is called for. Using current channels takes advantage of the audience and community already established by the Office, and helps ensure that accounts are not orphaned or abandoned after the project lifecycle completes or as staffing and funding levels change.

Coordinating your project's social media efforts with those of the entire Office should be considered in your online communications plan.

==Support, Training and Inspiration==
*Here is a list of eHealth Strategy Office's currently [[/active channels/]]

===Tool Training===
These links will become active as training information is developed.
*[[Documentation:EHealth_Strategy_Office/Tech_Support/Blogging_Best_Practices|Blogging Best Practices]]
*Twitter
*Facebook
*YouTube
*Other social channels?
*Communications Planning resources

==Acknowledgements==
Some portions of these guidelines adapted from: http://webstandards.govt.nz/guides/strategy-and-operations/social-media/high-level-guidance/

Other inspirations from:
*http://www.cma.ca/socialmedia
*http://www.razorfish.com/img/content/RazorfishSIMguideWebJuly2009.pdf
*http://www.ibm.com/blogs/zz/en/guidelines.html
*http://www.intel.com/content/www/us/en/legal/intel-social-media-guidelines.html

'''THIS IS A DRAFT DOCUMENT'''

[[Category:EHealth Strategy Office]]

Documentation:EHealth Strategy Office/Staff Documentation/Website Guidelines

2012-03-02T18:04:28Z

Danhooker:

{{Template:Documentation-eHealth_Strategy_Office}}__TOC__
THIS IS A DRAFT DOCUMENT
==General Guidelines==
All projects and events should have a presence on the eHealth Strategy website. When you contribute your reflections to the website, the eHealth Strategy Office exercises leadership, engages in knowledge translation, and becomes a more experienced counselor for our clients.
eHealth office needs to communicate through words and action our expertise in technology. By demonstrating the office’s activity on the Web, we will be more effective in establishing a reputation for leadership in eHealth.

Blogging and web presence Knowledge Translation effort, not only for office identity but personally for your career
The following guidelines are intended to help guide your contributions to the website. This not an attempt to overwhelm you. Rather, the intent is just the opposite -- to encourage you to embrace the social media world by providing you some guidelines. so that we provide a consistent yet diverse voice in

===Approval Process===
If you have an idea about what to write, and you want to be clear about what is appropriate, see the project manager or research coordinator. If they are unsure, the appropriate director will be consulted.
In the case of external partners, permission to post documents produced with shared responsibility (i.e. not solely our office staff) should be sought. If the information is sensitive.

===Authorship===
Everyone will blog under their own name, which is great because you'll be able to see a corpus of work develop.

Any author that produces content for the eHealth Strategy Office blog will retain copyright over their work; however, the copyright holder must grant the eHealth Strategy a non-exclusive distribution license so that project-related material may remain on the EHSO website in perpetuity. In the event that a staff member leaves the office, any content relating to project activity must remain active on the site.

===Appropriateness===
Keep in mind that you represent EHSO at all times. Employees are personally responsible for what we write on blogs or any online medium. Irresponsible blogging can risk legal action or require unnecessary damage control. However, thoughtful commentary and reflection about your work makes you and the office shine.

Before you publish a post, ask yourself: would I be OK having a client see what I write? And, how would I feel if this post were about me? Having an opinion is encouraged; but being closed-minded or purposely inflammatory is not appropriate.

Set aside time to contribute and to reflect on the work that you do. Strive for balance. We have demands of our clients to meet, too.

==Contribution Expectations==
===All Staff===
In addition to the responsibilities below, every staff member is responsible for their individual profile, including any publications.

===Branding Working Group===
Guide the strategy and guide the development of the site at a broad level. Delegate technical tasks for updating web pages and templates. Report on activities as appropriate. In addition to the roles and responsibilities listed below, we expect BWG members to actively support the website by consistently meeting or exceeding expectations at their job level, and through activism and promotion among other staff.

===Director level===
Agree to keep relevant staff informed about their activities (i.e. conferences, presentations, etc.) that are appropriate for promotion on the website. Sharing of pre-print publications with BWG for archiving. Minimum quarterly "expert" contribution to website. Encourage discussion and contribution from Research Coordinators during update meetings, including decision about when to include projects on the website. Include website contribution in Planning and Performance Review as a performance criterion.

===Communications Coordinator (Multimedia)===
Chair of BWG unless otherwise agreed upon. Weekly site review to ensure technical and editorial quality control. Supervise or contribute website content to relevant social media outlets. Liaison with MedIT and Public Affairs/FOM other relevant UBC official regarding website and communications. Responsible for image sourcing and editing/creation of graphics for website either personally or via delegation. Endeavour to retain contact with MedIT designers to iteratively develop website with new and exploratory functionality. Make recommendations to BWG about potential site improvements and content strategies.

===Event Coordinator===
Upon confirmation of date and time of any office event, create or delegate creation of EHSO website announcement. Also create UBC Events Calendar event linking to that announcement. If these tasks are reversed in order, amend UBC Calendar events as soon as possible to include link to EHSO announcement. Verify any other posts related to office events. Liaise with Communication Coordinator to ensure appropriate promotion of events on social media.

===Research Coordinators and Project Managers===
Take responsibility for project content in terms of relevance, currentcy and competence. Encourage contribution from Researchers regarding project activity and personal reflection. Allow time when possible in weekly update meetings to discuss potential website contributions with Researchers. Periodically check that all projects are represented on the website, or if projects need to be added or archived. If additions or removals are to be made, flag the Communications Coordinator, or if in doubt, the relevant Assitant Director.

===Researchers===
Keep project activity and events updated on the website. Take pictures at events and relevant activities when possible. Use time with Research Coordinators to discuss potential ways to contribute actively to the website.

==Technical Site Role Descriptions==
===Administrator===
Multimedia/Communications person, other staff as approved
*Can write and edit to all areas of the site
**Requires knowledge of HTML and Wordpress template editing and training session
*Add/Drop users
*All editor privileges
===Editor===
All other staff

*Edit all posts/pages
*Add new posts/pages

==Other Documentation==
*[[Documentation:{{PAGENAME}}/Workshop_Notes|Workshop Notes]]
THIS IS A DRAFT DOCUMENT
[[Category:EHealth Strategy Office]]

Documentation:EHealth Strategy Office/Tech Support/Website/Project Templates

2012-03-01T19:49:11Z

Danhooker:

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__TOC__
==Project Pages==
As you know, a major section of our website is the pages that describe the projects and any related actvity. These pages will eventually have two major sections: '''project information''' and '''related posts'''.

===Project Information===
Project information is general information about the project, designed to give website visitors a sense of the purpose and goals of your project. This information should be relatively static throughout the life of the project, and will likely draw heavily on the proposal that was used to create or fund the project.

The accuracy and currency of the project information is the responsibility of the assigned Research Coordinator.

This information will not generally be duplicated in blog posts updating visitors about the project, but will instead exist to be referred to if someone would like more information about a project. Blog posts about current project activity should be created as '''posts''' in WordPress, and assigned the appropriate Project category, so they will appear below.

===Related Posts===
Blog posts should be written periodically about project activity (see Blogging Best Practices). When you create a blog post about a project, it should be assigned a Project Category that will add the post to a list of all posts about that project.

The '''Related Posts''' section of each project page will display all these blog posts that have been assigned the project category. The most recent posts will appear in an automatically updating list called a '''loop'''.

The '''loop''' will be put in place after the creation of the project information has been finalized.

==Page Structure==
To achieve as much consistency as possible, please use headings in your project inforamtion that are similar (if not exactly the same) to the other projects as much as possible. We recognize that not every project may fit into a given template, but we want our pages to be as consistent as possible. Please consider the following common headings when creating your page.

===Headings===
*Background
*Purpose
*Overview
*Highlights
*Project Partners
*Project Team
*Contact

For an example, please see the [http://ehealth.sites.olt.ubc.ca/projects/inspirenet/ InspireNet] page.

To create headings in the visual editor, select the line of text that you want to be your heading (e.g. "Purpose") and select '''Heading 2''' from the styles menu.

==Warning==
Once the project information sections have been finalized for your project, a member of the BWG will insert the code necessary to power the Related Posts section. This will make it difficult to make edits to your project inforamtion without using the HTML editor.

'''If you need to make changes to your project information after the loop has been added to your page, please ask for assistance before publishing.'''

[[Category:EHealth Strategy Office]]

Documentation:EHealth Strategy Office/Tech Support/Website/Bio Templates

2012-03-01T19:48:58Z

Danhooker:

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__TOC__
==General Guidelines==
All biographies should be somewhat consistent in design. In general, they should include your
*job title. '''Please style this as a "Heading 3".'''
*email address
*phone number
*brief synopsis of your work experience.

<gallery>
File:Bio_1.png|Visual Editor of bio
File:Bio_2.png|HTML view of bio
File:Bio_3.png|Completed bio
</gallery>

Optional elements include a photo, CV, publications list, or a recent posts "loop" (see below).

==Photo==
If you add a photo to your page, please align it to the RIGHT. This usually helps the text formatting to display in a readable way. This is only a rule of thumb, and should not be considered a hard-and-fast rule if you think your photo looks better in a different position.

==Recent Posts by you==
You may choose to display a loop of recent posts that you have authored on the site. If you are comfortable with WordPress and HTML, the code to insert this loop is as follows:

<pre><div id="related-posts">
<h2 class="related-posts-label">'Your Name's' Recent Posts</h2>
[loop query="author_name=user_name&posts_per_page=3" view="archive"]
<h3 class="older-posts"><a href="/author/user_name/">View all 'Your Name's' posts...</a></h3>
</div>
</pre>

Adding this loop used to ruin the formatting of some pages, but it doesn't seem to be causing this issue anymore. If you add this function to your bio, and afterward the formatting doesn't seem to be working correctly, see the page on HTML basics to add your <nowiki><p></nowiki> tags back in, or notify a member of the branding working group who should be able to fix it for you.

[[Category:EHealth Strategy Office]]

Documentation:EHealth Strategy Office/Tech Support/Website/HTML Basics

2012-03-01T19:48:40Z

Danhooker:

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__TOC__
==HTML Resources==
*[http://www.w3.org/MarkUp/Guide/ Getting Started with HTML] - World Wide Web Consortium
*[http://w3schools.com/html/html_intro.asp HTML Introduction] - W3 Schools
*[http://htmldog.com/guides/htmlbeginner/ HTML Beginner Tutorial] - HTML Dog

==What is HTML?==
HTML stands for [http://en.wikipedia.org/wiki/HTML HyperText Markup Language]. It is a way of describing how a set of text and images should be displayed to the viewer, similar in concept to a newspaper editor’s markup symbols.

HTML is very easy to use; it was designed that way. You don’t have to be a programmer to use it. If you can edit a text file, then you can write HTML (and if you can write an email, you can edit a text file).

==HTML Elements (Tags)==
The basic unit of HTML markup is called a Tag. You wrap tags around chunks of text that you want to manipulate. These chunks might be <nowiki><p>paragraphs</p></nowiki>, they might be <nowiki><strong></nowiki>'''bold text'''<nowiki></strong></nowiki>, they might be <nowiki><a href="http://www.google.com/">hyperlinks</a>.</nowiki>

The reason we say “wrap” is because every tag that is opened, must eventually be closed.
*An opening tag looks like this: '''<nowiki><a></nowiki>'''
*A closing tag, which begins with a slash, looks like this: '''<nowiki></a></nowiki>'''
*Tags that do not require both an opening and a closing tag, such as line breaks, look like this: '''<nowiki><br /></nowiki>'''

===Commonly Used Tags===
*p. Paragraph. This makes a chunk of text appear like a paragraph, with a little bit of space at the bottom.
*br. Line Break. This tag forces a new line to begin. Used to hard wrap text.
*a. Anchor. These make links. Not sure why they don’t call it a link, but hey.
*img. IMaGe. Allows you to insert images into your page.
*div. Division. This is a general block element that allows you to create styles around.

===Attributes===
Most tags also carry things called attributes. This is a way of specifying specific things that you want to make happen.

Tags with attributes inside it looks like this:

<pre><a href="http://www.google.com/">This will be a link to Google.</a></pre>

; Tag <nowiki>: a</nowiki>
:Attribute 'href'. Reference: website that the link will go to. (Don't forget the http:// !!)

<pre><img src="http://flickr.com/.../example.jpg" alt="An example image" height="250" width="400" /></pre>

;Tag <nowiki>: img</nowiki>
:Atrribute 'src'. Source: where the actual image is located (most often a URL)
:Attribute 'alt'. Alternate text: words that are used by screen readers for blind visitors and search engines.
:Attribute 'height'. Specifies how high (in pixels) you want your image to appear.
:Attribute 'width'. Specificies how wide (in pixels) you want your image to appear.

[[Category:EHealth Strategy Office]]

Documentation:EHealth Strategy Office/Tech Support/Website/Working With WordPress

2012-03-01T19:48:23Z

Danhooker:

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__TOC__
==WordPress Resources==
Basic WordPress tutorials are available on the UBC Wiki and Wordpress.org.

'''UBC Wiki:'''
* [[Documentation:WordPress_Basics/Basics_1_Guide|UBC Wiki - Basics 1 Guide]]
* [[Documentation:WordPress_Basics/Basics_1_Guide/Add_Images_and_Media|UBC Wiki - Basics 1 Guide, Adding images and media]]

'''WordPress.org:'''
* [http://codex.wordpress.org/Getting_Started_with_WordPress#Posting_in_WordPress Wordpress.org - Posting in Wordpress]

What follows is a contextualization of those instructions for the EHSO Website.

==The Basics==
===Definitions===
There are two basic types of content on a Wordpress site: pages and posts.

'''Pages''' are reserved for more static content, such as ‘About Us,’ ‘Mission and Vision’ and the staff biography pages. These pages typically contain content that does not change often, and have URLs that do not contain their publishing date (e.g., /about-us/organization/kendall-ho)

'''Posts''' are used to create time-sensitive or otherwise new content on an ongoing basis, and, rather than being inserted into the page hierarchy, posts are assigned categories and tags that are updated in real time when new posts are added. You can tell posts from pages by the date recorded in the URL (e.g., /2011/05/13/example-blog-post).

'''Categories''' contain posts related to broad themes, such as projects (e.g., iCON) or areas of interest (e.g. Technology, Education, Research). Categories cannot be created for each post, any new post must be put into one or more existing categories. If you feel a category is missing or is conspicuously absent, please bring your concern to the BWG.

'''Tags''' are keywords that provide further context for the category and can be assigned to every new post by the author (e.g., ‘telemedicine’, ‘first nations’, academic detailing, community engagement). Tags may one word or a phrase.

===User Profile===
Every member of the site also has a User Profile. This is different than your biography page; it is a profile for your user of the actual WordPress site.

This is the page where you can set up a user picture, and the name under which your posts will appear.

==Logging into the Website==
When you navigate to our [http://ehealth.sites.olt.ubc.ca/ website], at the very bottom of the page there is a small link to "[http://ehealth.sites.olt.ubc.ca/wp-login.php?action=cwl Site Administration]" which will take you to the login page. You will need a [http://www.it.ubc.ca/cwl/homelink.shtml CWL] to join the website.

==WordPress Editor==
There are two ways to create and edit content on any Wordpress site, including the EHSO website: the Visual Editor, and HTML. The Visual Editor works like any word processing software with familiar buttons. The writing on the screen shows what your post will look like when you publish it to the website. It is not required to know anything about website editing to use the Visual Editor, and for this reason it is recommended for general use.

[[File:VisualEditor_1.png|thumb|none|200px|The WordPress Visual Editor]]

The HTML editor is only for use by those people who have a working knowledge of web design, and the ability to parse and edit code for the purposes of formatting page and post content.

[[File:VisualEditor_2.png|thumb|none|200px|The WordPress HTML Editor]]

==Page Editing==
Project pages are designed to display not only static information about the project (i.e., Purpose, Overview, Partners, etc.) but also a dynamic list of the most recent posts about the project. To accomplish this they employ a special WordPress function called a ‘Loop.’

Due to a known bug in the WordPress editor, because of the presence of the Loop, any switching between the HTML view and the Visual Editor will remove any formatting applied to the static text. For this reason, researchers and students do not have permission to edit pages, but may bring any errors or changes to the attention to the relevant Research Coordinator or Project Manager.

==Post editing/creation==
Posts may be created by any and all staff. There are several things to keep in mind when creating a post.

===Title===
The title of your post is important as it will be the guide to our readers as to the content. Try to think of a title that is both descriptive and catchy. For example:
* Post Title: “World Health Organization report on telemedicine prepared by eHealth Strategy Office finally released!"

===Main post content===
Give consideration to your writing, and keep in mind that writing for the web is different than report or academic writing. Seriousness is OK, but formality is not as necessary and may discourage casual users from reading your whole post. Try to write in shorter sentences and keep to one main idea per paragraph. For more insight into writing for the web, check out usability guru Jacob Nielsen’s page here: http://www.useit.com/alertbox/9710a.html

[[File:KitchenSink_2.png|thumb|none|400px|The WordPress "Kitchen Sink"]]

* If you use another program outside Wordpress, such as Microsoft Word, to draft your posts, please keep in mind that formatting errors may occur when you copy and paste them into Wordpress, particularly with lists and headings. To combat this there are buttons in the editor’s Kitchen Sink to “Paste from Word” or “Paste as Plain Text.”
* If you include information about external resources available on the web, you must include a link to that item, or a relevant informational page about it. Whenever possible, avoid linking directly to PDF documents; if there is no suitable alternative webpage, include a note in the text that your link will send the user to a PDF. (e.g., “The report is available here in PDF.)
* Please, always use spell check before posting!

===Permalink===
The ‘permalink’ appears just below the title of the post after a few seconds. Wordpress allows us to customize your posts URL using this field. Please try to shorten your URL to three or four words, or a suitably brief form of your title. For example:
* Post Title: “World Health Organization report on telemedicine prepared by eHealth Strategy Office finally released!”

[[File:Permalink_1.png|thumb|none|300px|Default Permalink]]
* Unedited (auto) permalink: world-health-organization-report-on-telemedicine-prepared…

[[File:Permalink_2.png|thumb|none|300px|Editing a Permalink]]
* Edited permalink: who-telemedicine-report

===Categories===
[[File:categories_1.png|thumb|none|200px|Selecting Categories]]
Each post must belong to at least one category, and may be assigned to more than one at the discretion of the post author. New categories will be created with discretion, as necessary, through consultation with the BWG. Some general considerations for post authors:
* If your post is related to an internal project, course or educational activity, please select both the relevant specific category (e.g., eMentoring) AND the general parent category above it (e.g. Projects).
* If your post is an announcement of an upcoming event, in addition to selecting any relevant project category as above, also add it to the Events category. This category should be used for internal office events only (e.g. eHIPP).
* If your post is of more general interest, such as a report or review or website, please select a non-project category such as Research, Technology, or Education.

===Tags===
[[File:tags_2.png|thumb|none|200px|Adding tags]]
Tags are keywords or phrases that provide additional context for the reader and site users, to be used in conjunction with Categories. Over time, similar tags on posts will be used to sort and display related content on our site.
* Tags may be created on the fly, but if there are pre-existing tags that relate to your post, try to use them. For example, if possible, choose Community Engagement instead of creating a new tag called Community Partnerships. A list of commonly used tags can be viewed by clicking “Choose from the most used tags.”
* Try to use 3-5 tags per post.

===Featured Image===
[[File:FeaturedImage_2.png|thumb|none|200px|Set Featured Image]]
Every post should have at least one image included in the body of the post. This is to ensure that there is a visual hook that draws readers into the content. The primary image that is included in the post should also be designated the “featured image.”
* If you have not yet uploaded an image, select “Add an Image” above the text editor. When you upload or select the image you would like to use, before clicking “Insert Into Post,” select “Use as featured image.”
* If the image has already been inserted into the post, select “Set Featured Image” in the Featured Image widget. Select “Media Library” and find the image you have used in your post. Click “Show” and then select “Use as featured image.”

[[Category:EHealth Strategy Office]]

Documentation:EHealth Strategy Office/Tech Support/Website/Sign Up

2012-03-01T19:47:35Z

Danhooker:

{{Template:Documentation-eHealth_Strategy_Office}}
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__TOC__

Upon starting at the eHealth Strategy Office, you will be added as a user of the office website and blog, ehealth.med.ubc.ca. This will give you the ability to add posts and pages, set up your bio, and contribute to the office blog.

==Step 0: Get a CWL==
To become a user on the website, you will need a Campus-Wide Login (CWL). Please see the CWL sign-up instructions [http://www.it.ubc.ca/cwl/support/tutorials/create_account.shtml#facstaff here] if you do not already have one. Once you have a CWL, please continue with these instructions.

==Sign up to CMS@UBC==
To sign up to the eHealth website, you will receive an email from CMS@UBC (cms.support@ubc.ca). In it, there will be a link to click that will take you to the signup page.
[[File:cms.jpg|200px|none|thumb|Signing up to CMS@UBC]]

==Log In to eHealth Website==
You may see the following page, which is a generic WordPress dashboard, without our site information. To get access to our website's dashboard, visit our site at http://ehealth.med.ubc.ca/
[[File:cms2.jpg|200px|none|thumb|The generic UBC WordPress dashboard]]

At the bottom of the page, click Site Administration to log in. This is how you will log into our site whenever you want to write a post or update some information. The Site Administration link is visible on every page.
[[File:ehealthlogin.png|200px|none|thumb|Logging into the eHealth website]]

==Fill out your website profile==
Once you have signed up, you will be taken to your profile page. This will give information about you to users of our website. Please fill in as much as you can, including your full name.
[[File:profile1.jpg|200px|none|thumb|Your Wordpress profile]]

*Please select your full name from the "Display name" drop-down menu.
*Near the bottom of the page, you can fill in a description of yourself. This information will be displayed above the lists of all the posts that you have contributed to the website, as you can see here: http://ehealth.med.ubc.ca/author/danhooker/
**A good example text to put in this field would include your job title, and a link to your bio on the website. For example:
**<nowiki>[JobTitle] at UBC eHealth Strategy Office. <a href="/about/organization/firstname-lastname/">Click here</a> for more information about [FirstName].</nowiki> You will create your bio page later which will make this link active.
[[File:profile2.jpg|200px|none|thumb|Sample information for your profile]]
{{Template:Documentation-eHealth_Website_Help}}
[[Category:EHealth Strategy Office]]

Template:Documentation-eHealth Strategy Office

2012-03-01T19:44:45Z

Danhooker:

<div class="noembed" style="height:100%;">
{| class="infobox" style="width:220px; float:right; border:1px solid #a3bfb1;"
|style="border-bottom:1px solid #abd5f5; background-color:#ffffff; padding:5px;" |
[[File:EHealthlogo.png|200px|center|frameless]]
|-
|style="border-bottom:2px solid #abd5f5; background-color:#d0e5f5; padding-top:.5em; text-align:left;" | [[File:squareinfo.png|40px|left]] '''[[Documentation:EHealth_Strategy_Office|eHealth Strategy Office<br/>Documentation]]'''
|-
|style="border-bottom:1px solid #abd5f5; background-color:#f1f5fc; padding-left:5px;" |
'''Staff Documentation'''
*[[Documentation:EHealth_Strategy_Office/Staff_Documentation/Orientation_Manual|Orientation Manual]]
*[[Documentation:EHealth_Strategy_Office/Staff_Documentation/Website_Guidelines|Website Guidelines]]
*[[Documentation:EHealth_Strategy_Office/Staff_Documentation/Social_Media|Social Media Guidelines]]
|-
|style="border-bottom:1px solid #abd5f5; background-color:#f1f5fc; padding-left:5px;" |
'''Technical Support and Training'''
*[[Documentation:EHealth_Strategy_Office/Tech_Support/Website|Office Website]]
*[[Documentation:EHealth_Strategy_Office/Tech_Support/Social_Media|Social Media]]

|-
|style="border-bottom:1px solid #abd5f5; background-color:#f1f5fc; padding-left:5px;" |
'''Research Toolkit'''
*[[Documentation:EHealth_Strategy_Office/Research_Toolkit/Recommended_Links|Recommended Links]]
|-
|style="border-bottom:1px solid #abd5f5; background-color:#f1f5fc; padding-left:5px;" |
'''Project Documentation'''
*[[Documentation:EHealth_Strategy_Office/Project_Documentation/HWIP|HWIP]]
|-
|style="background-color:#f1f5fc; padding-top:5px;"|
<inputbox>
type=search
width=30
namespaces=Documentation**
searchbuttonlabel=Search UBC Wiki
</inputbox>
|}
</div>
<noinclude>This is a template for navigating the eHealth Strategy Office Documentation files.</noinclude>

Template:Documentation-eHealth Strategy Office

2012-03-01T19:43:01Z

Danhooker:

<div class="noembed">
{| class="infobox" style="height:100%; width:220px; float: right; border:1px solid #a3bfb1;"
|style="border-bottom:1px solid #abd5f5; background-color:#ffffff; padding:5px;" |
[[File:EHealthlogo.png|200px|center|frameless]]
|-
|style="border-bottom:2px solid #abd5f5; background-color:#d0e5f5; padding-top:.5em; text-align:left;" | [[File:squareinfo.png|40px|left]] '''[[Documentation:EHealth_Strategy_Office|eHealth Strategy Office<br/>Documentation]]'''
|-
|style="border-bottom:1px solid #abd5f5; background-color:#f1f5fc; padding-left:5px;" |
'''Staff Documentation'''
*[[Documentation:EHealth_Strategy_Office/Staff_Documentation/Orientation_Manual|Orientation Manual]]
*[[Documentation:EHealth_Strategy_Office/Staff_Documentation/Website_Guidelines|Website Guidelines]]
*[[Documentation:EHealth_Strategy_Office/Staff_Documentation/Social_Media|Social Media Guidelines]]
|-
|style="border-bottom:1px solid #abd5f5; background-color:#f1f5fc; padding-left:5px;" |
'''Technical Support and Training'''
*[[Documentation:EHealth_Strategy_Office/Tech_Support/Website|Office Website]]
*[[Documentation:EHealth_Strategy_Office/Tech_Support/Social_Media|Social Media]]

|-
|style="border-bottom:1px solid #abd5f5; background-color:#f1f5fc; padding-left:5px;" |
'''Research Toolkit'''
*[[Documentation:EHealth_Strategy_Office/Research_Toolkit/Recommended_Links|Recommended Links]]
|-
|style="border-bottom:1px solid #abd5f5; background-color:#f1f5fc; padding-left:5px;" |
'''Project Documentation'''
*[[Documentation:EHealth_Strategy_Office/Project_Documentation/HWIP|HWIP]]
|-
|style="background-color:#f1f5fc; padding-top:5px;"|
<inputbox>
type=search
width=30
namespaces=Documentation**
searchbuttonlabel=Search UBC Wiki
</inputbox>
|}
</div>
<noinclude>This is a template for navigating the eHealth Strategy Office Documentation files.</noinclude>

Documentation:EHealth Strategy Office/Tech Support/Website/Sign Up

2012-03-01T19:42:19Z

Danhooker:

{{Template:Documentation-eHealth_Strategy_Office}}
{{Template:Documentation-eHealth_Website_Help}}
__TOC__

Upon starting at the eHealth Strategy Office, you will be added as a user of the office website and blog, ehealth.med.ubc.ca. This will give you the ability to add posts and pages, set up your bio, and contribute to the office blog.

==Step 0: Get a CWL==
To become a user on the website, you will need a Campus-Wide Login (CWL). Please see the CWL sign-up instructions [http://www.it.ubc.ca/cwl/support/tutorials/create_account.shtml#facstaff here] if you do not already have one. Once you have a CWL, please continue with these instructions.

==Sign up to CMS@UBC==
To sign up to the eHealth website, you will receive an email from CMS@UBC (cms.support@ubc.ca). In it, there will be a link to click that will take you to the signup page.
[[File:cms.jpg|200px|none|thumb]]

==Log In to eHealth Website==
You may see the following page, which is a generic WordPress dashboard, without our site information. To get access to our website's dashboard, visit our site at http://ehealth.med.ubc.ca/
[[File:cms2.jpg|200px|none|thumb]]

At the bottom of the page, click Site Administration to log in. This is how you will log into our site whenever you want to write a post or update some information. The Site Administration link is visible on every page.
[[File:ehealthlogin.png|200px|none|thumb]]

==Fill out your website profile==
Once you have signed up, you will be taken to your profile page. This will give information about you to users of our website. Please fill in as much as you can, including your full name.
[[File:profile1.jpg|200px|none|thumb]]

*Please select your full name from the "Display name" drop-down menu.
*Near the bottom of the page, you can fill in a description of yourself. This information will be displayed above the lists of all the posts that you have contributed to the website, as you can see here: http://ehealth.med.ubc.ca/author/danhooker/
**A good example text to put in this field would include your job title, and a link to your bio on the website. For example:
**<nowiki>[JobTitle] at UBC eHealth Strategy Office. <a href="/about/organization/firstname-lastname/">Click here</a> for more information about [FirstName].</nowiki> You will create your bio page later which will make this link active.
[[File:profile2.jpg|200px|none|thumb]]
{{Template:Documentation-eHealth_Website_Help}}
[[Category:EHealth Strategy Office]]

Documentation:EHealth Strategy Office/Tech Support/Website/Sign Up

2012-03-01T19:41:37Z

Danhooker:

{{Template:Documentation-eHealth_Strategy_Office}}__TOC__

Upon starting at the eHealth Strategy Office, you will be added as a user of the office website and blog, ehealth.med.ubc.ca. This will give you the ability to add posts and pages, set up your bio, and contribute to the office blog.

==Step 0: Get a CWL==
To become a user on the website, you will need a Campus-Wide Login (CWL). Please see the CWL sign-up instructions [http://www.it.ubc.ca/cwl/support/tutorials/create_account.shtml#facstaff here] if you do not already have one. Once you have a CWL, please continue with these instructions.

==Sign up to CMS@UBC==
To sign up to the eHealth website, you will receive an email from CMS@UBC (cms.support@ubc.ca). In it, there will be a link to click that will take you to the signup page.
[[File:cms.jpg|200px|none|thumb]]

==Log In to eHealth Website==
You may see the following page, which is a generic WordPress dashboard, without our site information. To get access to our website's dashboard, visit our site at http://ehealth.med.ubc.ca/
[[File:cms2.jpg|200px|none|thumb]]

At the bottom of the page, click Site Administration to log in. This is how you will log into our site whenever you want to write a post or update some information. The Site Administration link is visible on every page.
[[File:ehealthlogin.png|200px|none|thumb]]

==Fill out your website profile==
Once you have signed up, you will be taken to your profile page. This will give information about you to users of our website. Please fill in as much as you can, including your full name.
[[File:profile1.jpg|200px|none|thumb]]

*Please select your full name from the "Display name" drop-down menu.
*Near the bottom of the page, you can fill in a description of yourself. This information will be displayed above the lists of all the posts that you have contributed to the website, as you can see here: http://ehealth.med.ubc.ca/author/danhooker/
**A good example text to put in this field would include your job title, and a link to your bio on the website. For example:
**<nowiki>[JobTitle] at UBC eHealth Strategy Office. <a href="/about/organization/firstname-lastname/">Click here</a> for more information about [FirstName].</nowiki> You will create your bio page later which will make this link active.
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[[Category:EHealth Strategy Office]]