With funding from the Robert Wood Johnson Foundation (RWJF), the Foundation for eHealth Initiative (eHI) and the Center for Democracy & Technology (CDT) are collaborating on Building a Consumer Privacy Framework for Health Data, designed to address the current gaps in legal protections for health data outside HIPAA’s coverage. Experts and leaders representing healthcare, technology, academia and consumers are collaborating on the project and exploring preferred pathways to increase protection of non-HIPAA-covered data. The full Steering Committee met in Washington, D.C. on February 11 and subsequently formed two workgroups: the Structure Workgroup and the Substance Workgroup. The former is developing a proposal for what structure a framework to govern non-HIPAA covered data might look like, and the latter is working through the scope of the data that the framework would cover. Each workgroup will meet three times before the second full Steering Committee meeting this summer; upcoming meeting dates are below. For more information or to join our project mailing list, please contact Alice Leiter at alice@ehidc.org.

July 21: In-Person Consumer Health Privacy Framework Steering Committee Meeting (closed meeting, Steering Committee members only)