With patients across the country voicing a growing desire for greater engagement in and control over their medical care, a new study involving patients in Boston, Pennsylvania and Seattle will examine the impact of adding a new layer of openness to a traditionally one-sided element of the doctor-patient relationship—the notes that doctors record during and after patients’ visits.
Funded through a $1.4 million grant from the Robert Wood Johnson Foundation (RWJF) Pioneer Portfolio—which supports innovative ideas and projects that may lead to important breakthroughs in health and health care—the 12-month OpenNotes© project will evaluate the impact on both patients and physicians of sharing, through online medical record portals, the comments and observations made by physicians after each patient encounter. Approximately 100 primary care physicians and 25,000 patients at Beth Israel Deaconess Medical Center (BIDMC) in Boston, Geisinger Health System in Pennsylvania, and Harborview Medical Center in Seattle will participate in the 12-month trial.
“Patients remember precious little about what happens in the doctor’s office,” says Tom Delbanco, M.D., 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 responsibility for 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, R.N., M.B.A., instructor in medicine in the Division of General Medicine and Primary Care at BIDMC and Harvard Medical School. As reported in the Journal of General Internal Medicine, Delbanco and Walker found that most consumers want full access to their medical records.
The study also found that consumers expect computers to play a major role in their future 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 giving patients access to their notes. However, the debate is largely uninformed by evidence,” says Stephen Downs, assistant vice president at RWJF and member of the Foundation’s Pioneer Portfolio. “In the context of a physician’s day-to-day work, opening up notes is 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 online. By contrasting the experience of trial participants with unenrolled physicians and patients, the researchers hope to measure the impact of OpenNotes through online surveys of both groups of 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.” (via rwjf.org/pioneer)
This summer, a team of 100 primary care physicians across the country will embark on the “OpenNotes” initiative. OpenNotes will give 25,000 patients the chance to read doctors’ notes on their medical records via a secure Internet portal.
“I think patients will not be very surprised by what they see”
The OpenNotes pilot program is designed to determine if access to doctors’ notes will result in improved doctor-patient communication. For doctors, notes serve as a reminder of the unique characteristics of the patient, their medical history, and their care. For patients, doctors’ notes may help to clarify issues or explain care approaches. The hope is that inviting patients to review their notes could improve their understanding of their health, foster productive communication, stimulate shared decision making, and ultimately lead to better outcomes.
“I think this may be a real step in transforming the patient and provider relationship,” said Tom Delbanco, MD, Professor, Harvard Medical School and Physician (Former Chief) Division of General Medicine & Primary Care, Beth Israel Deaconess Medical Center in Boston.
Some fear that patient access to physicians’ notes could have negative consequences, such as confusing or worrying patients.
“I think patients will not be very surprised by what they see,” said Dr. Delbanco. “In many ways, the note is supposed to mirror what happened in the encounter. But patients will probably get insight into what’s worrying their doctor and what their doctor’s intentions are. They also may find things for which they want more explanation. We don’t know exactly what will happen. But we are excited to find out if OpenNotes can improve care from both the physician and the patient perspective,” said Dr. Delbanco.
The program will be evaluated primarily through web-based surveys. Researchers believe that if the pilot goes well, OpenNotes could become the standard in years to come.
The full report is available here: