Tobias Esch, Roanne Mejilla, Melissa Anselmo, Beatrice Podtschaske, Tom Delbanco, and Jan Walker
T. Esch, R. Mejilla, M. Anselmo et al., "Engaging Patients Through OpenNotes: An Evaluation Using Mixed Methods," BMJ Open, published online Jan. 29, 2016.
The OpenNotes program was launched in 2010 to give patients real-time, unfettered access to their medical records. Early evaluations were positive, both from patients’ and providers’ perspectives. This study, conducted five years later, found the program helps to deepen trust between primary care providers and patients while increasing patients’ understanding of their health and improving their ability to take care of themselves. Concerns about privacy appear to be relatively minor. The program is now being extended to specialists, mental health providers, and physical therapists.
Historically, patients have had little or no access to their own medical records. Technical issues and security and privacy concerns have been roadblocks, as has providers’ apprehension that such information might “scare” patients. Launched in 2010 in Boston, rural Pennsylvania, and Seattle, the rapidly expanding OpenNotes movement is allowing more and more patients real-time, online access to their clinical notes. Findings after one year were striking: four of five patients had read their notes, and two-thirds reported clinically important benefits, like improved understanding of their medical condition. And, despite some initial resistance, all participating physicians agreed to continue with the program.
"Patients pointed to increased trust, improved management of medications, and a stronger sense of control, and they hoped that easy access to doctors’ notes would become more widespread."
Since then, OpenNotes has been replicated in other settings with similar success. Writing in BMJ Open, former Commonwealth Fund Harkness Fellow Tobias Esch and colleagues at Harvard University reported on their study of the original adopters of OpenNotes five years later. Focusing on patients with chronic illness, the authors used survey data and face-to-face interviews to examine the relationship between using fully transparent electronic medical records and quality. They looked specifically at the doctor–patient relationship, patient engagement, self-care, self-management skills, and clinical outcomes.
The OpenNotes movement is spreading to health care organizations across the country and has extended beyond primary care physicians to include medical and surgical specialists, mental health providers, and physical therapists. “As the use of fully open and transparent medical records spreads, it is important to gain a deeper understanding of the possible benefits or harms, and to characterize target populations that may require varying modes of delivery,” the authors conclude.
Researchers analyzed survey data from several thousand patients in the Boston area who had participated in a pilot OpenNotes program. They focused on about 500 “heavy users,” defined as patients who had viewed at least seven notes in the past year. Researchers also conducted interviews with a subset of heavy users.
The evidence thus far indicates that giving patients immediate, unfettered electronic access to their medical records has the potential to improve care and possibly outcomes as well.