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RWJF Report Examines Health Data Amidst Public Concerns

April 3, 2015
by Rajiv Leventhal
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The Princeton, N.J.-based Robert Wood Johnson Foundation (RWJF) and an independent advisory committee have released a report on health data, offering specific recommendations to better harness the data and address public concerns.

The report, “Data for Health, Learning What Works,” gives an overview of the insights, concerns, and ideas that communities shared during “listening sessions” about how to harness data to improve health. Local leaders, residents, and professionals from a wide range of sectors offered thoughts on what data was important to them for improving health in their communities and what is needed to facilitate useful data sharing. The listening sessions took place in five cities across the country in late 2014, and the information was gathered by a Data for Health advisory committee.

The recommendations outlined by RWJF include improving privacy and security safeguards, educating the public on the value of sharing personal health information and why it is so important, and investing in community data infrastructure. According to the report, innovations, such as Fitbit and Jawbone, as well as Apple’s ResearchKit, present an unparalleled opportunity to harness data to improve health, yet the public’s concerns about privacy, combined with a lack of infrastructure for accessing and protecting their information, pose significant barriers to progress.

“Data moves at the speed of trust,” said David Ross, director of the public health informatics institute and co-chair of the Data for Health advisory committee. “Those are the words we heard from people across the country. As a nation, we need to strike a balance between privacy and the free flow of information.”

What’s more, RWJF has shared the report with various groups to help support data sharing, including the Office of the National Coordinator for Health Information Technology (ONC). In fact, Karen DeSalvo, M.D., National Coordinator for Health IT, participated in four out of five of the listening sessions to gain perspective on the concerns, aspirations, and challenges that communities face in collecting and sharing data. The listening sessions helped establish elements for inclusion in a national consensus agenda and shaped the advisory committee’s recommendations, which fell across these three key areas:

  • Establish the value of data and communicate the significant public health benefits of capturing and sharing health data.
  • Ensure data privacy and security, and build trust with both individuals and communities before collecting their data.
  • Build community data infrastructures that integrate information on health with social and community services, and support collaboration across sectors.

The report can be seen in its entirety here.

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