Survey Finds Patients Excited, Physicians Hesitant About Open-access Medical Notes

Patients want to see their doctors' notes. Some doctors aren't so sure that's a good idea. According to two FPs who've embraced the practice, however, it's a no-brainer.

The results of baseline surveys conducted before the launch of a yearlong pilot designed to explore the pros and cons of giving patients open access to their physicians' medical notes show that patients enthusiastically supported the idea. Their physicians, however, seemed dubious about the effects of such transparency.

Researchers at the three sites participating in the OpenNotes pilot -- Boston's Beth Israel Deaconess Medical Center (BIDMC), Harborview Medical Center in Seattle and the Geisinger Health System in central and northeastern Pennsylvania -- surveyed some 173 primary care physicians and nearly 38,000 patients during the sign-up phase of the 12-month pilot, which launched in summer 2010. Survey respondents included both physicians who volunteered to participate in OpenNotes and those who declined to participate, as well as patients cared for by both groups of physicians.

The survey findings, which were published in the Annals of Internal Medicine, (11-page PDF; About PDFs) show that patients "expressed considerable enthusiasm and few fears (about viewing the notes), anticipating both improved understanding and more involvement in care." Doctors, on the other hand, "varied widely" in their predictions about how opening up visit notes would affect their practices and their patients and pointed out that sharing visit notes has broad implications for quality of care, privacy and shared accountability.

A recent release from the study authors indicated that although many of the primary care doctors who volunteered to participate in OpenNotes predicted possible health benefits, the balance of those who chose not to participate voiced doubts about positive impacts.

"Among the 173 doctors completing surveys, the majority expressed concerns about confusing or worrying patients with the content," the authors said. "Doctors also anticipated that they would write their notes less candidly and that responding to patient questions might be exceedingly time-consuming."

"Doctors were divided in many of their expectations," said lead author Jan Walker, R.N., M.B.A., in the release "The issues we highlight have important consequences for both their work life and quality of care."

But to family physician Douglas Iliff, M.D., of Topeka, Kan., the study physicians' trepidation is just "silly."

Giving patients access to their medical notes not only keeps him honest, said Iliff, it also engenders trust and calms patients' fears by offering proof that he is "shooting straight with them."

Moreover, the trust born from this sharing saves him time, Iliff added, because he doesn't have to keep proving himself to patients. Specifically, it cuts down on patient questions that really are intended to probe for honesty and sincerity rather than explore the health issue at hand.

"I've been doing it (sharing notes with patients) for 25 years without any problems whatsoever," Iliff told AAFP News Now. "So physicians' fears have always -- to me -- been a testimony to their insularity, insecurity and/or paranoia."

Tom Delbanco, M.D., senior author and co-principal investigator of OpenNotes, said in the release that although physicians initially may be nervous about what patients will find when they "look into the doctor's black box," he expects both groups will benefit enormously from such transparency in time.

Steven Waldren, M.D., director of the AAFP's Center for Health IT, shares that view, saying he also benefited from sharing his notes with patients when he was still in practice.

"I think there is real value in engaging the patient in his or her care and making sure the patient understands the graveness of what's going on or that he or she understands the path going forward," Waldron said. "And with an electronic health record, you are able to create notes while the patient is right there with you, which allows the patient to clarify anything he or she said or add something he or she didn't think of at first. That dialogue definitely has value."

Waldren did acknowledge that, in his experience, the struggle to balance good care with open notes may mean watching your wording a bit more carefully.

"I did have one patient I struggled with a little bit in this regard," he told AAFP News Now. "This patient was very sensitive and needed a lot of TLC, and I needed to write notes to the other physicians taking care of the patient to let them know the patient needed longer appointments and so forth.

"So, I had to find a way to write the notes that was not derogatory or could be misconstrued as such. That is not a negative, but it does illustrate the need to balance openness in your notes to other providers with making sure you're delivering the best care possible to each individual patient."

In an editorial (excerpt) that accompanied the results of the baseline survey, co-authors Thomas Feeley, M.D., and Kenneth Shine, M.D., point out that although privacy concerns are important, patients have a legal right to see their own medical records and share them with whomever they choose.

"Such sharing of information could greatly improve communication, engage patients in their care, and help them formulate questions in advance of a visit on the basis of prior notes and test results."

With the yearlong pilot study now over, researchers have begun to evaluate data from follow-up surveys completed by participating doctors and patients and analyzing other metrics, including how often patients reviewed their notes, shared them with others or corrected errors their doctors may have made. No date has been given for the release of final results from the pilot, which is being funded, in part, by a $1.4 million grant from the Robert Wood Johnson Foundation's Pioneer Portfolio.