RWJF grant to facilitate health data sharing with researchers

Genetic Alliance, a nonprofit health advocacy organization network, has received a $500,000 grant from the Robert Wood Johnson Foundation (RWJF) to create and evaluate the effectiveness of a "white label" version of the Platform for Engaging Everyone Responsibly (PEER) that allows individuals to share health data with researchers as they see fit.

The new version would advance an understanding of health and disease, and accelerate the development of cohorts for clinical trials, according to a press release.

Using PEER, individuals can share data, set privacy and access preferences, and manage their personal health. The white label version of PEER will include a dashboard and standard operating procedure to facilitate customization of the system by disease advocacy and community organizations wishing to offer it to their members, according to RWJF.

The grant also provide resources to analyze PEER, offering pre- and post-tests to assess the experience of participants as they make decisions about data sharing, privacy and access.

“Giving people the mechanisms to share their health data in ways that are meaningful and comfortable to them is critical to developing a new relationship between people and researchers and clinicians, a relationship better able to develop new knowledge and insights that can improve health,” said Paul Tarini, senior program officer at the Robert Wood Johnson Foundation, in a statement.