Health consumers want to know their data will be used for helpful purposes, yet seek assurances of privacy and protection against breaches, according to a new report from the Robert Wood Johnson Foundation.
The report, "Data for Health, Learning What Works," was based on "listening sessions" the foundation held in five cities last fall--Philadelphia, Phoenix, Des Moines, Iowa, San Francisco, and Charleston, South Carolina--in which people were asked to talk about their hopes, aspirations, worries and concerns when it comes to using digital data to improve health.
In the discussion to build a national health data infrastructure, such as the JASON report and interoperability roadmap, the voices of members of the public have not been heard, foundation member Michael W. Painter wrote at PLOS Blogs. These sessions aimed to rectify that.
Participants in the listening sessions said they need guidance and tools that link data to help them make better health decisions. At the same time, the committee found that having the data does not mean people will work to make the necessary health changes.
"Data moves at the speed of trust," David Ross, director of the Public Health Informatics Institute and co-chair of the Advisory Committee, said in an announcement. "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."
Among the report's recommendations:
- Strengthen and modernize policies governing data to protect personal health information, account for new technologies and implement policies that address new security risks as they arise. Most federal and state laws protecting the privacy of health data are years (and in some cases, decades) old.
- Establish the equivalent of a Bill of Rights for individuals who wish to access their own personal health data.
- Invest in community data-sharing infrastructure and initiatives to create networks that integrate health with social and community services, and support collaboration across sectors.
- Launch a broad public education awareness campaign on the value of data use and exchange.