When physicians share notes with their patients

3 min read

Patients want more control over their own health care, researchers find

Patients across the country are voicing a growing desire for greater engagement in, and control over, their own medical care. A new study led by Beth Israel Deaconess Medical Center (BIDMC) will examine the impact of adding a new layer of openness to a traditionally one-sided element of the doctor-patient relationship – the notes from patients’ doctors’ visits. 

Funded through a $1.4 million grant from the Robert Wood Johnson Foundation (RWJF) Pioneer Portfolio, the 12-month OpenNotes Project will bring together approximately 100 primary care physicians and 25,000 patients to evaluate the impact on both patients and physicians of sharing the comments and observations made by physicians after each patient encounter. Physicians and patients at Geisinger Health Systems in Pennsylvania and Harborview Medical Center in Seattle will also participate in the 12-month trial.

“Patients remember precious little about what happens in the doctor’s office,” says Tom Delbanco, a primary care physician at BIDMC and the Richard and Florence Koplow-James Tullis Professor of General Medicine and Primary Care at Harvard Medical School. “We expect OpenNotes will improve patient recall, help patients take more charge of their care, and offer an opportunity for avoiding potential medical errors as patients and families monitor and think about their care in a much more active and knowledgeable way.”

That premise is based in part on a recent study by Delbanco and Jan Walker, an instructor in medicine in the Division of General Medicine and Primary Care at BIDMC and Harvard Medical School. Reporting in the Journal of General Internal Medicine, Delbanco and Walker found that consumers want full access to all of their medical records and are willing to make some privacy concessions in the interest of making their medical records completely transparent.

The study also found that, going forward, consumers fully expect that computers will play a major role in their medical care, even substituting for face-to-face doctor visits.

“We learned that, for the most part, patients are very comfortable with the idea of computers playing a central role in their care,” Walker says. In fact, patients said they not only want computers to bring them customized medical information, they fully expect that in the future they will be able to rely on electronic technology for many routine medical issues, she says.

“Doctors have strong differences of opinion about this, but there is almost a religious character to the debate – it’s uninformed by evidence,” says Stephen Downs, an assistant vice president at RWJF and member of the foundation’s Pioneer Portfolio, which supports innovative ideas and projects that may lead to important breakthroughs in health and health care. “It’s a subtle change – but it could reposition notes to be for the patient instead of about the patient, which might have a powerful impact on the doctor-patient relationship and, in the long run, lead to better care.”

To collect evidence, physicians and patients will fully share, through a simple one-step intervention, all encounter notes. By contrasting the experience of trial participants with unenrolled physicians and patients, the researchers hope to measure the impact of access to the notes through online surveys of both doctors and patients.

“While this intervention potentially could disrupt the current flow of primary health care, it holds considerable potential to transform the doctor-patient relationship,” says Delbanco. “By enabling patients to read their clinicians’ notes, OpenNotes may break down an important wall that currently separates patients from those who care for them. It may promote insight and shared decision making by bringing closer together the unique expertise of the clinician and the unique understanding of himself or herself that each patient possesses.”