Efforts to improve public health by collecting, analyzing, and sharing personal health data must first address public concerns about privacy, transparency, and access, a report from the Data for Health Advisory Committee, with support from the Robert Wood Johnson Foundation, recommends.
Based on "listening sessions" held in five cities as part of RWJF's Data for Health initiative, the report, Data for Health, Learning What Works (90 pages, PDF), highlights insights, concerns, and ideas for how to harness data to improve health, including worries about privacy, security, and the potential for misuse. The report then details recommendations from the committee — which includes public health practitioners, physicians, healthcare researchers, health technology and informatics experts, consumers, and representatives of local government — aimed at addressing these and other issues.
Key recommendations include 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. The report also calls for a broad public awareness campaign about the benefits of data sharing; the creation of a community resource scorecard that would provide information on how communities are doing and facilitate comparisons across communities; and the use of data generated by social media to capture real-time local and national health trends.
"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."