Just Share: RWJF Addresses Privacy Concerns Over Sharing Health Data

One part of the big data research craze involves mining the data stored by our myriad personal devices and using it improve health. You know, making dietary and physical activity recommendations, rewriting grocery lists, calculating lifespan—that kind of thing. Not surprisingly, such efforts have raised some major red flags with personal privacy advocates who worry that this information could fall into the wrong hands. 

This week, a meeting of the Data for Health Advisory Committee, convened with support from the Robert Wood Johnson Foundation, determined that before data science can proceed to revolutionize personal health, it must address the public’s concerns about privacy, transparency, and access.

These conclusions were gleaned from five “listening sessions” held in different cities as part of RWJF’s Data for Health initiative. A report, titled Data for Health, Learning What Works, highlights the diverse concerns, insights, and ideas for how to improve health by using data. It also addresses privacy concerns.

The committee, which includes public health practitioners, physicians, healthcare researchers, health technology and informatics experts, consumers, and representatives of local government, made recommendations for how we can avoid these pitfalls, including:

updating policies governing personal data to account for new technologies and security risks; establishing a "Bill of Rights" for individuals to access their own health data; investing in data-sharing infrastructure and networks that integrate health with social and community services; and launching a pilot Code for America data analytics program that would help municipalities promote and achieve greater transparency in the use of public health data.

Also in the works: a big public awareness campaign about the benefits of data sharing.

"The power of data is not the data itself; it is in how we use this information to address our country's health problems," said RWJF president and CEO Risa Lavizzo-Mourey. "The recommendations put forth by the advisory committee provide a blueprint for how we can effectively share data to help build a Culture of Health where everyone has the opportunity to live longer, healthier lives."

"Ultimately, we need to develop a data infrastructure that is bi-directional, where communities can communicate what they want and receive something of value in return," said Ivor Horn, advisory committee co-chair and medical director of the Center for Diversity and Health Equity at Seattle Children's Hospital. "The data and the technology to build this infrastructure exist. But first, we need to understand how communities are using and want to use the data, and establish trust for exchanging this information."