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November 16, 2015

Contemplations on the quantified self

Key Data for Health recommendations:

  • Demonstrate the value of sharing health data to encourage individuals to harness their own data to improve community health.
  • Earn the trust of those providing their health data; honor their contribution by guarding privacy and using all data in a meaningful way.
  • Provide tools to health advocates that can help them turn static databases into insights and usable information.

Earlier this year, I blogged about the Robert Wood Johnson-funded Data for Health initiative, a tour of five U.S. cities that explored how data could improve the health of communities. I was pleased to see that the recommendations that came out of this initiative back in April were well-received. But in addition to that positive reaction, we also want the good work of that event to carry forward into the future.

Now that it’s been several months since the conclusion of Data for Health, I’d like to pause for a consideration of how health data is making an appearance in my own life. Over the last couple of months, I’ve seen wearable health trackers popping up on wrists of staff all around the PHII and Task Force for Global Health offices. This is mostly due to Emory University’s Move More challenge, an initiative to get university staff active and healthy.* The university is offering special prizes like gift cards, iPads and Apple Watches to some of those who meet their fitness goals as measured by their trackers. Staff are making time for walking breaks, swapping step tips in the hallways and challenging each other to mini-competitions—and attendance at the Tuesday table tennis club has soared.

PHII Senior Financial Analyst Irfan Momin sports a Fitbit (worn as part of the Emory Move More challenge) at a meeting of the Tuesday table tennis club, an informal gathering of Task Force staff that he organizes.

In addition to impressing me—some PHII staff are getting upwards of 15,000 or 20,000 steps a day—this trend fascinates me. Wearables in general are interesting because they demonstrate that not only are people willing to track their own health data, but they’re not all that skittish about sharing it with a private company like Fitbit, Jawbone or Apple. All they ask in return is useful interpretation of that data, whether it’s beautiful data visualization or personalized recommendations for improving their health and fitness.

Alternatively, people are also willingly supplying their health data to researchers using services like PatientsLikeMe, a site initially launched to help ALS patients connect with each other to discuss symptoms, treatment and care. Platforms like this provide a unique value: conversations with and empathy from others experiencing the same health issues, resulting in the kind of support network that simply didn’t exist pre-Internet.

“Data moves at the speed of trust.”

- Bill Brand, Director of Public Health Informatics Science
PHII

Since its launch, PatientsLikeMe has expanded outside of ALS, and drug companies and medical device companies have begun to take notice. They’re finding that the data on this site can be better than clinical trial data. Why? Because people who volunteer unsolicited to tell the world their most personal details are more likely to be telling the truth than when answering a doctor’s questions or a surveyor’s questions.

Is this the future of health data: personal buy-in to the quantified self to drive prevention and open patient data platforms like PatientsLikeMe to drive treatment? This is an evolving trend that we need to watch before we can fully understand it, and it will largely rely on people’s comfort with making their data available to researchers. As Bill Brand often says, “data moves at the speed of trust.”

*Explanatory note: all Task Force for Global Health and Public Health Informatics Institute staff are employees of Emory University.

David A. Ross, ScD

President/CEO of the Task Force for Global Health, former director of PHII