Five Years After the Cures Act: OpenNotes and the Evolution of Information Sharing

April 13, 2026

In April 2021, a sweeping federal policy transformed the way people experience healthcare. With the implementation of the 21st Century Cures Act Information Blocking Rule—finalized by the Office of the National Coordinator for Health Information Technology (ONC)—people across the United States gained near real-time access to their electronic health information, including the clinical notes written by their care teams. Five years later, the “information sharing rule” stands as a defining milestone in the movement toward transparency in health care.

For those of us who have been part of the OpenNotes journey, the Cures Act represented the scaling of an idea whose time had come. What began as a research initiative over a decade ago—inviting patients to read their doctors’ notes—is now a nationwide expectation. The Cures Act and Information Blocking rule affirmed what we have long believed: that access to clinical notes is not just a technical feature, but a fundamental component of patient-centered care. (For a deeper look at the rule, see our overview of the ONC’s information blocking regulation.)

A growing body of research reinforces this shift. Patients who read their notes consistently report better understanding of their health, improved recall of care plans, and a stronger sense of control over their care. Patients are identifying errors, clarifying misunderstandings, and engaging more actively in their care. These contributions improve both safety and quality. At the same time, many clinicians have adapted how they document, often with greater attention to clarity, tone, and respect for patient perspectives.

While the Information Blocking rule made it possible for researchers to move into new areas of inquiry, access alone is not the endpoint. I’m excited about the potential for artificial intelligence to improve the patient experience and support safer, more informed care. At the same time, I remain cautious about the current hype cycle. New technologies often arrive with great promise, but without careful implementation, they can also deepen existing inequities or introduce new risks—particularly for patients who are already underserved or vulnerable.

This new environment is shaping how we approach the next phase of OpenNotes. We’re deepening our commitment to partnering with patients and care partners in the design of research itself. Initiatives like the OpenNotes Insight Panel are helping ensure that patient voices are not just heard, but actively shaping what we study and how we move forward.

If the past five years were about opening the record everywhere, the next chapter is about making that information truly meaningful.

With openness, always,

Catherine (Cait) M. DesRoches, DrPH
Executive Director, OpenNotes, Beth Israel Deaconess Medical Center
Associate Professor of Medicine, Harvard Medical School