A Conversation with the Health Data Exploration Project

Mar 31, 2014, 1:12 PM, Posted by

Person tracking their health data on a mobile device.

RWJF’s Lori Melichar and Steve Downs sat down with grantees Kevin Patrick and Jerry Sheehan who lead the Health Data Exploration project to discuss early insights from their work, shared in the recent report Personal Data for the Public Good: New Opportunities to Enrich Understanding of Individual and Population Health.”

Patrick and Sheehan are working on a team that is exploring the use of personal health data in research and how to bridge the “worlds” of individuals who track data about their own personal health, companies that develop tracking apps and devices and typically hold these data, and health researchers.

Here are highlights from their conversation:

Lori: Why are you interested in self-tracking data?

Kevin: There’s all of this personal data out there and it really presents us with an opportunity to gain insights into health that we just have not been able to gain before. If we can better measure what's happening 24/7 with people, that can really accelerate our understanding of health. Imagine physical activity data sets, sleep data sets, data sets on mood and data sets on where you live, like zip codes. Once you have all of this data, you get a more persistent view of what's really happening in someone's life.

Jerry: The juxtaposition of the various types of data that people track begin to allow you to ask more holistic questions, and look at correlations that honestly no one's looked at before because the data hasn't been cost affordable to analyze.

Lori: You surveyed over one hundred people who are already tracking their health and found considerable enthusiasm for sharing that data with researchers. How do you see those findings extrapolating to the rest of the population?

Kevin: I think the people who responded to our survey are really very representative of the future and that we’re seeing the start of a trend. With the uptake of smartphone apps and wearable devices, I really think we're onto something here. What we’re seeing are some very, very positive signs from these folks and some great insight into what is “to be.”

Jerry: And that overwhelming interest in sharing data with researchers that we saw is reinforced by a recent IOM survey that looked at people who were engaging in social networking—so another convenience sample—which found overwhelming support for data sharing with scientists or others who were doing research on a certain health condition. Even internationally, in the UK they've gone back and asked patients if they would share their health record with researchers, and the numbers are upward of 80 percent.

Steve: You also spoke with several companies that are making these apps and devices, and hold this data. What insights did you get from those interviews?

Jerry: There really did appear to be two types of companies. Companies that thought of themselves as consumer electronic device companies, who understood that they were generating data and that the data was giving their users useful interactivity input and output from a metrics standpoint, and companies that looked at themselves as data services companies. And the companies that tended to think of themselves as data services companies seemed more likely to think about their data as their intellectual property that, if shared, would somehow give someone insight with their competitive edge. The consumer electronics companies just didn't have that impression. They had concerns about how sharing data could impact their users, but they weren't against it from an intellectual property standpoint.

Lori: How did people feel about sharing their data with companies?

Kevin: We found that people were more comfortable sharing their data with companies if they felt that a university or researchers were the ones doing the research; if it wasn't just a company doing research for profit. While I think there's a useful sort of buffering role that academic researchers can provide that will reduce the friction for individuals to donate their data, I think there is also a benefit to companies for having researchers involved. If the data transfer and IP arrangements can be worked out—and that's a nontrivial matter, the whole process of working with universities is never easy—then I also think companies will begin to see and explore how this research could be useful to them from an R&D perspective.         

Steve: In the report, you talk about an emerging ecosystem of researchers, companies and individuals who are already trying to do this. Can you give us an example?

Kevin: We describe in our report an emerging ecosystem of players in this environment and it's relatively immature now, but I think there's an opportunity for it to grow and develop. That’s not to say that at the end of the day there aren't going to be some big barriers, but at least there's activity in this environment right now that's promising. One of the companies that seems to be finding a comfort with and a model for opening their data up to researchers is FitBit. Small Steps Lab basically has a preferred relationship with FitBit and their API, so when Fit Bit gets approached from researchers—and they get approached a lot—they're now able to turn to this secondary company to act as a preferred provider of their data.

Steve: My impression from reading the report is that there's an opportunity to go from these early examples where it’s challenging and feasible but difficult, to something that actually ultimately becomes routine with some concerted efforts.

Jerry: There are tremendous opportunities, but also a lot of hard work that's going to need to go into understanding where the rough edges are for individuals, researchers and companies, and what ethical issues we need to consider to make sure that when we build the necessary tools to enable this type of research, such as protocols for sharing data, that we make them thoughtful and respectful of the individual and the intent of their donation—that they are contributing personal data for the public good.

This commentary originally appeared on the RWJF Pioneering Ideas blog.