Healthcare in the new age of transparency

Debates around access to and ownership of an individual's digital information have taken center stage in health care. A decade ago, the idea of offering patients ready access to their clinical notes was a fringe idea. Today, information transparency in health care is a pressing legislative and regulatory issue in the United States and elsewhere. The 21st Century Cures Act of 2016 requires that clinicians and health care organizations give patients electronic access to the information in their electronic medical records. Rules to enact this legislative priority by the Office of the National Coordinator for Health Information Technology and the Centers for Medicare and Medicaid Services substantially expanded the types of information that must be easily accessible to patients and exchanged among clinicians in electronic form. A growing body of research supports the notion that sharing transparent medical records, including clinical notes with patients, can help to strengthen communication, trust in clinicians, and patient engagement. Patients receiving dialysis may receive particular benefits from this greater transparency due to their increased risk for fragmented care. In the paper, we review the decade of research focused on the effects of sharing clinical notes with patients and the implications for improved engagement and care.