By Christine Kern, contributing writer
Robert Wood Johnson Foundation awards grant to help further partnerships in unlocking personal health information from wearables and health data streams.
A recent report from the Health Data Exploration Project found people would support sharing personal health information with scientists for the public good. In light of that report, the Robert Wood Johnson Foundation has awarded them a $1.9 million grant to create a network of researchers, scientists, companies, and others to catalyze the use of personal health data for the public good.
The report, with the caveat that their own data was guaranteed to remain private, revealed 57 percent of survey respondents were fine with having their personal health data made available for research. More than 90 percent of respondents said that it was important that the data be anonymous. While a percentage of respondents indicated that they didn’t care who owned the data they generate, a clear majority wanted to own or at least share ownership of the data with the company that collected it.
The Health Data Exploration Project, from the University of California San Diego and University of California Irvine, will use researchers, scientists, and companies to collect and store personal health data, captured from wearable devices, smartphone apps, and social media. They will work with researchers who mine the data for patterns and trends, with other strategic partners.
“Our preliminary explorations in this area demonstrated an extraordinary set of complementary experience, skills and assets among these groups,” said Kevin Patrick, MD, MS director of the Health Data Exploration project and a professor of Family and Preventive Medicine in the UC San Diego School of Medicine. “The Network will bring together these partners to strategize, coordinate and experiment with using personal data to understand health.”
This kind of collaboration between researchers and companies is not unprecedented. One company that has already started this type of work, according to the report, is SmallStepsLab, an intermediary between Fitbit, a data-rich company, and academic researchers. Researchers pay SmallStepsLab for special access to an API held by the company as well as other enhancements that they might want.
Through a set of research projects using personal health data, the network will identify policies and best practices for using these new forms of data to produce insights about health.
Actually retrieving the data through the network will be a unique challenge, the data is spread over different companies and repositories. Many of these companies believe they hold ownership of this data, and few consumer-facing devices have the capacity for research-level data collection. So part of the network’s job will be to update existing policies and procedures for managing privacy and techniques for analyzing and interpreting consumer personal health big data.
Alonzo Plough, vice president for Research-Evaluation-Learning and chief science officer at RWJF explained that addressing the barriers to using these new forms of data in research will help toward building “a national culture of health.”