A network is being set up to develop partnerships between companies and researchers to unlock personal health information from wearables and health data streams. A recent report from the Health Data Exploration Project said that people would be fine with scientists accessing their personal health information if the goal was for the public good. So the Robert Wood Johnson Foundation has awarded a $1.9 million grant to make it happen, according to a statement from the foundation.
A recent report by the project showed that, so long as they were able to get assurances that their own data would remain private, 57 percent of survey respondents said they were fine with having their private health data made available for research. More than 90 percent of respondents said that it was important that the data be anonymous. Although some 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.
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It’s not like the kind of collaboration between researchers and companies that the network envisions is unprecedented. The report offers up the example of 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.
Deborah Estrin, a professor of computer science at Cornell Tech and of public health at Weill Cornell Medical College, said the digital footprints that people leave behind from wearable technology and shopping behavior could yield significant insights on public health.
“Personal health data can reveal the ways that everyday activities promote health or lead to disease and yield insights about the long-term, cumulative health effects of environment and lifestyle. When multiple data streams converge, personal health data can provide a more holistic view of the richness of human lives.”
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.
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Setting up a network is one thing but actually retrieving the data will be something of a challenge. Why? This data is spread over different companies and repositories. Many of these companies see this data as theirs. Few consumer-facing devices have the capacity for research-level data collection. But 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.”
It will be interesting to see how democratically the data is allocated and whether the initiatives from the network will be able to live up to the data privacy and data sharing standards the individuals it surveyed demand.
