The University of San Diego's California Institute for Telecommunications and Information Technology (Calit2), with the support of the Robert Wood Johnson Foundation, is teaming up with major quantified self thought leaders to launch Health Data Exploration, an initiative aimed at convincing the companies that make tracking devices, connected health devices, and fitness apps to make the data their devices collect available for research purposes.
In addition, the project aims to "examine the barriers that thwart sharing currently, addressing issues like data quality, privacy and confidentiality, and how to help individuals who may want to donate their own health or medical data to researchers," according to a RWJF spokesperson.
The project will be led by Kevin Patrick and Jerry Sheehan of Calit2, supported by an impressive advisory board, which includes data-sharing advocate Hugo Campos (who we featured in our February podcast), 23andMe founder Linda Avey, and Larry Smarr, founding director of Calit2. Also on board is Tim O'Reilly of O'Reilly Media fame and Gary Wolf, one of the founders of the Quantified Self movement itself. Finally, rounding out the team is Martha Wofford, leader of Aetna's CarePass initiative, another effort to get data collectors to share. Also involved in the project is Sendhil Mullainathan, a Harvard economics professor and founder of ideas42, a nonprofit focused on leveraging insights from behavioral economics.
The project, announced today in an RWJF blog post, is predicated on the idea, often espoused by the quantified self crowd, that collecting day-to-day health data could reveal previously unavailable health information.
"There is an increasing recognition that health is not so much a factor of our engagement with the health care system (though that helps), but something we both experience and influence 24/7," writes RWJF Chief Technology Officer Stephen Downs. "We eat, we drink, we move around, we sleep. We experience pain and discomfort, elation and sadness."
According to a report released in January by the Pew Internet Project, 69 percent of Americans track some kind of health data, and one in five of those trackers use some form of technology.
The project leaders haven't announced any partnerships with companies yet, although they have mentioned Nike, Fitbit, RunKeeper, and Jawbone in the announcement. In the RWJF blogpost, they also discuss the efforts of PatientsLikeMe, CureTogether, and Massive Health as examples of new insights that have already come from data-sharing.
At the Quantified Self conference in San Francisco last year, 100Plus founder Chris Hogg led a discussion and call to action to create a similar data sharing warehouse that connected health and fitness companies. While his concept included a research focus the group also discussed how such a data sharing initiative could lead to new services and applications or, once integrated, make existing ones more useful. This week's Calit2 initiative may be a first step in that direction.