OpenNotes Program Expands with Toolkit; Psych Notes, Too

By Susan Carr

OpenNotes is a program that allows patients to read their clinicians’ notes as they appear in the medical record. The program started less than five years ago and currently includes 2 million patients in health systems across the country, including the Department of Veterans Affairs. Sharing clinical notes with patients is part of a movement to increase patients’ access to information about their care, including quality and cost data, in addition to their own medical records.

To encourage further expansion, OpenNotes has published a toolkit of free resources online. The toolkit includes materials to help clinicians make the case for OpenNotes at their institutions, examples from practices already using the program, surveys for use in research, and aids for communicating in advance with patients and communities about the program. The OpenNotes program, including the toolkit, is supported in part by the Robert Wood Johnson Foundation.

OpenNotes began with a pilot in 2010 at three study sites that represented broad socioeconomic and geographic diversity. Primary care physicians and patients joined the study voluntarily, after completing a survey, and physicians were able to exclude patients who they felt might be harmed in some way by reading visit notes. Participating patients had online access to their physicians’ notes following ambulatory visits. The program was considered to be a success; patients took advantage of the opportunity to access their notes, and physicians found that the program resulted in few if any problems.

Full disclosure: My primary care physician (PCP) and I participated in the OpenNotes pilot at Beth Israel Deaconess Medical Center (BIDMC) in Boston. Through BIDMC’s patient portal, PatientSite, I already had access to my laboratory and radiology results, medication lists, scheduling, referrals, and secure email messaging. OpenNotes was a logical and welcome evolution of an already well-established program. Though my medical needs are simple and infrequent, I appreciate being able to augment my memory with access to my doctor’s notes. If I were to shop for a new PCP, I would only consider practices that offer patients online access to their records, including clinical notes.

In JAMA’s series, “A Piece of My Mind,” four clinicians who are involved with OpenNotes at BIDMC advocate including mental health in the program. They are currently involved in a pilot program to share mental health notes. With the exception of the VA, practices that use OpenNotes usually exclude behavioral health. The exclusion is based on an assumption that patients might be harmed by reading honest reports about their mental health problems, possibly reject their clinician’s advice, and generally disrupt the care they need. In arguing that the exclusion is potentially harmful and runs counter to the “transparency” movement, Kahn, Bell, Walker and Delbanco make a strong argument for OpenNotes in general and perhaps for mental health services in particular:

Based on our experiences as psychiatric, medical specialty, and primary care clinicians, we suggest that transparency may instead yield fruitful opportunities. By writing notes useful to both patients and ourselves and then inviting them to read what we write, we may help patients address their mental health issues more actively and reduce the stigma they experience. …Anecdotally, some doctors have commented that inviting their patients to see their problems in writing was far more effective in catalyzing behavior change than was discussing them.

OpenNotes is a logical evolution of the movement in which patients ask that there be “nothing about me without me.” It also appears to augment care by encouraging clinicians to write thoughtful, nonjudgmental notes and by extending the opportunity for patients to participate as fully informed and trusted partners in care.