RWJF Tackles Concerns About Health Data Sharing, Privacy
April 3, 2015 in News
The report was based on sessions held in five cities last year, during which stakeholders were asked to discuss their expectations and concerns related to leveraging data to improve health. Specifically, Michael Painter, senior program officer at RWJF, in a blog post said the discussions aimed to include the public in the process of developing a national health data infrastructure (Hall, FierceHealthIT, 4/2).
The “Learning What Works” events were part of RWJF’s Data for Health initiative (DeSalvo, “Health IT Buzz,” 4/2). The initiative aims to establish a nationwide “culture of health” that is conducive to “timely, ready access to information that people need to make informed health decisions,” according to Painter (iHealthBeat, 10/17/14).
The report was produced by RWJF’s Data for Health Advisory Committee.
According to the report, five themes surfaced during the discussions:
- Using data;
- Exchanging data;
- Protecting data;
- Needs of individuals as they relate to data; and
- Needs of communities as they relate to data (RWJF report, 4/2).
Specifically, the report found that consumers want to be assured that their health data will be:
- Used for helpful purposes; and
- Kept private and protected against data breaches.
In addition, participants expressed a need for guidance and tools that provide timely and meaningful data to help them make smart health choices (FierceHealthIT, 4/2).
To address public concerns, the advisory committee made several recommendations, including:
- Developing a community resource scorecard to measure and compare resources being used within and across communities;
- Developing a standard policy equivalent to the Bill of Rights for individuals who want to access their personal health data;
- Investing more in community-level data sharing infrastructure and initiatives;
- Launching a data analytics pilot program by Code for America to promote transparency through open-source applications;
- Launching a sweeping awareness campaign on the value of using and sharing data;
- Modernizing state and federal laws that govern health data to better protect such information and account for new technologies and risks; and
- Using data from social media to identify health trends (RWJF release, 4/2).
In addition, the report suggested creating partnerships among the Office of the National Coordinator for Health IT, the Patient-Centered Outcomes Research Institute, NIH and other stakeholders to further the goals of Data for Health, with a focus on vulnerable populations (RWJF report, 4/2).