RWJF awards Calit2 project $1.9M to explore health data sharing

By Aditi Pai
08:09 am
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Health Dat Exploration project Calit2The Health Data Exploration project, developed at the University of California San Diego and the University of California Irvine, received a $1.9 million grant from the Robert Wood Johnson Foundation (RWJF). Funds from the grant will be used to build out the Health Data Exploration's network of  researchers, scientists, companies that want to experiment with and analyze personal health data.

"We have high hopes that personal health data will provide a unique window onto the many factors that influence health on a daily basis," Alonzo Plough, chief science officer at RWJF, said in a statement. "By addressing the barriers to using these new forms of data in research, we expect that the work of the network will help put us on a path to a better understanding of health and how we can build a national culture of health."

Calit2 Director at the Center for Wireless and Population Health Systems Kevin Patrick launched this project in May 2013 to convince the companies that make tracking devices, connected health devices, and fitness apps to make the data their devices collect available for research purposes. The project also planned to reach out to researchers to gauge their level of interest in accessing this type of data. By August 2013, the program had piqued the interest of 59 individuals, 29 researchers and 39 companies. 

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After sending out surveys to interested participants who were involved in health tracking, the team received completed responses from 355 individuals, 99 researchers and 20 companies in September 2013.

This year, in March, the Health Data Exploration project released results from the survey. In it, they found that individuals were "very willing" to share their tracking data for research purposes, especially if they knew the data would help spur along research in public health, computer science, and behavioral science sectors. The survey also found that companies acknowledged that research was a "worthy goal but not their primary business concern". Additionally, 46 percent of the researchers who participated in the study said they had already used self-tracking data in their research, and 23 percent of the researchers already worked with application, device, or social media companies.

This project is also supported by an advisory board that includes data-sharing advocate Hugo Campos, 23andMe founder Linda Avey, Larry Smarr -- founding director of Calit2, and Martha Wofford, leader of Aetna’s CarePass initiative, another effort to get data collectors to share.

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