Patient Controlled Health Data: Balancing Regulated Protections with Patient Autonomy

Health Care Blog September 3, 2019
Kenneth D. Mandl, MD, MPH, Dan Gottlieb, MPA, and Joshua C. Mandel, MD

A patient can, under the Health Insurance Portability and Accountability Act (HIPAA), request a copy of her medical records in a “form and format” of her choice “if it is readily producible.” However, patient advocates have long complained about a process which is onerous, inefficient, at times expensive, and almost always on paper. The patient-driven healthcare movement advocates for turnkey electronic provisioning of medical record data to improve care and accelerate cures.

There is recent progress. The 21st Century Cures Act requires that certified health information technology provide access to all data elements of a patient’s record, via published digital connection points, known as application programming interfaces (APIs), that enable healthcare information “to be accessed, exchanged, and used without special...

Today's Sponsors

Today's Sponsor