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Summary:

The Robert Wood Johnson Foundation and the California Institute for Telecommunications and Information Technology want to help scientific researchers work with companies and individuals to make sense of the growing mounds of personal health data.

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photo: Nonnakrit/Shutterstock

Health researchers are able to access and analyze your electronic health data, insurance claims and other kinds of traditional health information. But they’re largely locked out of the growing mounds of health and fitness data generated by Nike Fuelbands, Fitbits (see disclosure), Jawbone Ups and other devices and apps.

The various companies offering Quantified Self-type devices could open up their data through APIs (and several do for developers) or partner with researchers on one-off projects. But the Robert Wood Johnson Foundation (RWJF) and the California Institute for Telecommunications and Information Technology (Calit2) hope they decide to become a part of something bigger.

This week, the two organizations launched the Health Data Exploration project, with the goal of bringing companies, individuals and researchers together to get a better sense of the health questions and issues that can be explored with the new pools of data.

“There are potentially mountains and mountains of data that could open a window on to things we’ve never been able to look at before,” said Steve Downs, the chief technology and information officer at the RWJF. “The more we know, the more we’ll be able to learn about what it means to be healthy and what works and what doesn’t work.” Researchers can certainly supplement traditional data sets with original information collected from  surveys and other studies, but those methods tend to be costly, and even they can’t always provide the same kind of 24/7 perspective offered by new technology, he added.

For the most part, the foundation funds research and other projects around topics like childhood obesity, health care quality and expanding health care coverage. And a recent grant to the online health community PatientsLikeMe to create an open research platform actually partly inspired the Calit2 partnership, Downs said. But because this area is so new, he said, the foundation wants to first step back and take a collaborative look at the contours of the field — to take stock of researchers’ questions (and, in some cases, skepticism) and to understand the kinds of research projects that would be most valuable and feasible.

Already, user-generated health data – including Google searches on the flu and mental health issues and experiences shared on PatientsLikeMe – have led to interesting discoveries. And others in academia and the corporate world have launched new initiatives with a similar goal of making sense of disparate data streams.

Startup Tictrac, for example, launched to the public earlier this year to give people a single analytics dashboard for tracking the data from their various health devices and apps. WebMD and Qualcomm recently announced a partnership to give consumers a data-rich “health hub.” And the new Cornell NYC Tech campus unveiled a “small data” project to encourage people to build prototypes showing how Quantified Self data and other digital exhaust could lead to health benefits. But those projects aren’t as explicitly focused on furthering broad scientific research, and they’re not as open with their approaches.

At this point, Downs said, the foundation has not made a formal request for companies to participate in the project. But they already have a strong advisory board – including 23andme co-founder Linda Avey, O’Reilly Media CEO Tim O’Reilly – and that should help entice other corporate partners to jump aboard.

  1. Lucien Engelen Saturday, June 1, 2013

    Might read in this perspective about an initiative of the Radboud University Nijmegen Medical Center in the Netherlands http://www.medcrowdfund.org
    http://e-patients.net/archives/2012/12/the-patient-as-partner-in-medical-research-at-radboud-university.html

    1. Yes – of course! Thank you for adding Open mHealth!

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