A Facebook for Diabetes Health Data?

Traditionally, our health records are confidential and only shared publicly in the aggregate. But one website, PatientsLikeMe, encourages people with diabetes and other conditions to share their day-to-day health records with other users. Rather than keep health data private, the website’s founders believe crowdsourcing health data is a great way to help patients to feel empowered about their health.

Insulin Nation founding editor Chris Leach interviewed Sally Okun, vice president for advocacy, policy, and patient safety at PatientsLikeMe, at the Diabetes + Innovation 2013 conference in Washington D.C. Okun believes that if patients can track and share their data daily with others, they’ll be more likely to be proactive with their care outside the doctor’s office. This paradigm shift would require re-envisioning patients as untapped analysts who can dissect their own health care.

“They actually are repositories of a lot of data,” Okun says. “We haven’t actually given patients the tools to think about their experiences in a data-driven way.”

Okun believes that there is a missed opportunity if we only think of health care as a twice-a-year trip to the doctor’s office. The most important decisions of one’s own health occurs in everyday life, and often people with diabetes and others don’t have the support they need to make the best choices for their health in real time.

“The clinical experience of being in a doctor’s office is really so quite different than being at home and trying to manage your own care,” Okun says.

PatientsLikeMe was designed by a pair of MIT-educated mechanical engineers, Jamie and Ben Heywood, whose brother was diagnosed with ALS (Lou Gehrig’s Disease). The Heywoods grew frustrated with the lack of online community for people affected by chronic conditions and began the site in 2004. The site initially reads like a Facebook for chronic care conditions, with people with diabetes and others creating user accounts to share the ups and downs of managing one’s health with each other; they also can share their health data with friends and family.

thnkstk_177703631_girl_smartphone_300pxSocial media health data sharing also better utilizes the time and energy of health care professionals. Users of PeopleLikeMe share information about their conditions in novel and articulate ways online. Personal care physicians and researchers can gain insight into how chronic conditions affect patients. The online conversation also can help doctor and patient have a deeper and richer conversation about how to manage a chronic condition, she says.

And we’re only beginning to understand the magnifying effect of social interactions on one’s health. There is research showing that people with diabetes who attend group medical visits have better medical outcomes, for example. Social media is such a new phenomenon, but already physicians can see that it affects medical outcomes.

“Whether it’s diabetes care or other kinds of care, it’s clearly got a dose effect, and we have to start harnessing that,” Okun says.

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Craig Idlebrook is a past editor for Insulin Nation, Type 2 Nation, and Información Sobre Diabetes. He is now the community engagement and content manager for T1D Exchange.

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