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themes and tensions from south by southwest social health

March 18, 2011

in change,communication,health care,mobile health,social media,speaking engagements,wellness

i’ve just returned from south by southwest where i facilitated a discussion on employee wellness and attended the one-day health track. south by SXSWsouthwest added the health track this year after seeing the appetite for it when shwen gwee and dana lewis held a social health unconference last year (note: i missed that. won’t make that mistake again. their next unconference is in philadelphia on september 19. mark it down.)

i already posted a slew of links to tools and other interesting resources from these health sessions. now i want to share my take-aways, which i’ve grouped by themes and tensions that spanned the sessions.

data and usefulness

data came up in most of the health sessions i attended: freeing up data. the various types of data (individual/population/reference). data siloes.

todd park from the department of health and human services (HHS) spoke about the government creating an environment for improving health. by releasing the data, the government’s creating opportunities for entrepreneurs who can benefit themselves while benefiting the public, and the response has been enthusiastic. (see my other post for examples.) there are scads of tools and innovations. what’s not as abundant is usefulness.

aza raskin of massive health raised the same issue in the behavior change checklist: down with gameification. he spoke about the tools we have versus the tools we need, like tools that give us feedback on how what we’re doing today affects our body tomorrow or on how well we’re doing at not doing something, like not eating that cake again and again and again or not sitting on the couch—these things that improve our health but we receive no feedback on otherwise.

while it’s exciting to witness all of this health innovation, what we need is innovation that targets specific end users and end goals.

tools, apps and target audience

in health: is there really an app for that? jane sarasohn-kahn shared statistics on health apps and those who’ve downloaded them. there are 8,000 apps in the itunes library that fall under the health umbrella. 20% are for cardiofitness, 16% for food, 7% for sleep and 9% for strength training. the single largest audience downloading these apps are black, young and live in the city—not the audience who’d most benefit from these apps, but obviously the audience who finds them cool.

in mobile health in africa: what can we learn?, jaspal sandhu shared a story that started out the same. many developing countries had wondrous donated incubators, all shiny and new. until, that is, they broke and were abandoned because the locals didn’t have the parts or know-how to fix them. in an ah-hah moment, a team fashioned incubators out of old car parts, materials that were abundant and the locals knew how to use. to me, this true story is an allegory for creating solutions that are right for the audience you’re trying to support.

the asthmapolis inhaler tracker is my favorite discovery and an example of bringing together data, usefulness and target audience. asthmapolis is an inhaler combined with a GPS system. when an asthmatic has an attack and uses the inhaler, the GPS maps the location. this data directs public health efforts as they look into environmental reasons for clumped asthma attacks, and it directs individuals’ routines as they use asthmapolis to avoid asthma trigger “hot” spots.

people, not patients (or employees)

in the health: is there really an app for that? session, john de souza from medhelp remarked that “the market is consumers, not patients.” we need to “bring the consumer perspective to health.”

in health data everywhere: not a drop to link, we saw instances of consumers doing it for themselves. jamie heywood talked about patients like me, a service where people opt to share all of their health data in order to better understand their condition or disease. gilles frydman highlighted the association of cancer online resources’ (ACOR) mailing lists that connect cancer patients and caregivers with others. both provide more up-to-date and personalized information than can be found elsewhere—not to mention community.

this same “for the consumer!” rallying cry was discussed by indu subaiya regarding health 2.0’s developer challenges and in apps for healthy kids: government challenges FTW, where challenges are setting the stage for us, as consumers, to come together as a community of solvers. health 2.0’s developer challenge extends the consumers reach to actual developers who solve the real-life health problems we pose.

privacy

it wouldn’t be a health discussion without privacy popping up. and it did, in more than one session, but no more powerfully than in patients/caregivers on facebook: establishing boundaries without barriers. this session brought together mayo’s legal counsel, web and social strategists, and health providers to discuss how they use social media to benefit their patients while still respecting their privacy. it’s a question that’s very relevant to employers as they seek to add social solutions to their wellness efforts. daniel goldman and ed bennett shared practical solutions, such as collecting HIPAA releases and other releases electronically and answering first-person questions in the third person. but it was an anonymous tweeter who asked, “what is privacy?” that raised the point we need to address in social + health + work relationships.

that complex question of what is private and who defines it came up in my session on employee wellness, too. companies already enter our lives in many ways. stress from work distracts us from our home life. work demands interfere there, too. now add in wellness efforts and their intent to change the way we eat, move and more, and you have to ask: where do you draw the line between the part of our personal lives companies can enter and the part they can’t? we discussed but never adequately answered this question, and it’s one that needs resolution—perhaps only satisfactorily on a person-by-person basis.

environment

my favorite quote was todd park’s: “the one thing that trumps process is culture.” truer words were never spoken. put in all of the policies and programs you want and communicate the heck out of them. if your culture doesn’t support whatever change you’re trying to drive, you’re not going to get it. actions will revert to what the culture supports, drives and rewards. if you want healthy behavior, build a culture that creates it.

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{ 2 comments… read them below or add one }

Randall Reitz March 19, 2011 at 8:51 am

See Fran, aren’t you glad that we’re facebook friends? Otherwise, I never would have found your blog. Sounds like a great get together with good info re:health and social media.

The discussion of social media and confidentiality seems most salient to me. I’ve long believed that confidentiality–especially within the healthcare system caused far more damage than good. On the other hand, until we have universal healthcare, I understand the need to honor confidentiality so people don’t lose their coverage. I would personally have no problem putting my entire healthcare record online, but that’s probably because the most controversial healthcare I’ve received was a vasectomy, a twisted testicle, and some therapy after my divorce.

This is great stuff. Thanks for sharing.
Randall

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fran March 21, 2011 at 7:38 am

randall, LOL. yes. i am *delighted* that we’re facebook friends.

when the question “what is privacy?” was asked, my immediate thought was “who decides that?” it seems a very personal decision, and one that’ll differ from person to person. the panel also discussed the need to educate providers and patients about privacy and social tools so no one inadvisedly shared information.

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