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

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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 "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 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)

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

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?...
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