Frequent eHI collaborator Manatt Phelps & Phillips released yesterday a white paper titled A Shared Responsibility: Protecting Consumer Health Data Privacy in an Increasingly Connected World. Developed by Manatt Health, the firm’s healthcare legal and consulting group, with the support of the Robert Wood Johnson Foundation (RWJF), the paper examines the gaps in existing health data privacy protections, the implications these gaps may have for consumers and healthcare industry stakeholders, and options for advancing a forward-looking data privacy framework.

The eHealth Initiative Foundation (eHI) and the Center for Democracy & Technology (CDT) are currently collaborating on a separate but related project, Building a Consumer Privacy Framework for Health Data  that builds on the Manatt work and is also supported by RWJF.  Guided by a Steering Committee made up of experts and leaders from healthcare, technology, and consumer advocacy groups, the project’s goal is to address and shore up protections for the increasingly vast amount of health data that falls outside the scope of HIPAA.  

The Steering Committee will incorporate insights and analyses from the Manatt white paper in its work to identify preferred pathways and actionable steps to create additional consumer health privacy protections. This work includes the development of a standard set of data protections that companies would adopt in order to show their commitment to acting responsibly with respect to their users’ data, as well as a proposed structure for this new privacy framework.