How does consumer-collected health data fit into the research mix?

The proliferation of wearable devices such as Nike Fuelbands and Jawbone Ups that allow people to track their health and fitness by the minute only adds to the mounds of health data being generated, a GigaOM article points out. Combine that with information from electronic health records and insurance claims--among other sources of heath data--and myriad research possibilities emerge.

A new partnership between the Robert Wood Johnson Foundation and the California Institute for Telecommunications and Information Technology aims to assess the issues and questions that these new pools of health data can address.

Their just-launched Health Data Exploration project is designed to bridge the worlds of health researchers, small tech companies and individuals who might want to contribute their own data. It plans to explore issues surrounding such research, including unique scientific or ethical issues, how this data can be combined with other medical and private health data, intellectual property, data quality and privacy, according to its website.

The project was inspired, in part, by the foundation's recent $1.9 million grant to the online health community PatientsLikeMe to create an open research platform. But RWJF decided it was time to step back, according to GigaOM, and get input on researchers' questions--and skepticism at times--about which projects would be most valuable and feasible.

WebMD and Qualcomm have teamed up to provide a data-rich "health hub" for consumers, the story points out, and the Cornell NYC Tech campus has launched a "small data" project encouraging people to build prototypes of how their personal data could lead to health benefits. Those kinds of projects, though, are not tied in with the wider research community and are less open, according to GigaOM.

A recent Institute of Medicine discussion paper outlined ways that data from routine doctor visits could be used to create a learning healthcare system for all.

To learn more:
- find the GigaOM article
- here's the project's website

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