Doctors cautious, patients enthusiastic about sharing medical notes

Patients are overwhelmingly interested in exploring the notes doctors write about them after an office visit, but doctors worry about the impact of such transparency on their patients and on their own workflow, a report released this afternoon suggests.

In a study published in the Dec. 20 issue of the Annals of Internal Medicine, patient and doctor attitudes were surveyed extensively prior to the launch of the OpenNotes trial in which patients at Beth Israel Deaconess, Geisinger Health System of Danville, Pa., and Harborview Medical Center in Seattle were offered online access to their doctors’ notes written after office visits. Such notes have long been primarily within the doctors’ domain, even though patients have the legal right to obtain them.

“Doctors were divided in many of their expectations, and the issues we highlight have important consequences for both their work life and quality of care,” wrote lead author Jan Walker, a nursing researcher in Beth Israel Deaconess’ Division of General Medicine and Primary Care.

While many of the more than 100 primary care doctors who volunteered to participate in this experiment predicted possible health benefits from allowing patients to read their notes, the majority of those who declined participation were doubtful. Among the 173 doctors completing surveys across the three sites, the majority expressed concerns about confusing or worrying patients with the content. Doctors also anticipated that they would write their notes less candidly and that responding to patient questions might be overly time-consuming.

However, at Harborview, the majority of responding physicians (79 percent) felt that making notes available to patients is a good idea. They anticipated improved communication and patient education.

The patients who completed the baseline survey were almost uniformly optimistic about OpenNotes. Few anticipated being confused or worried

“The enthusiasm of patients exceeded our expectations,” wrote Walker. “Most of them were overwhelmingly positive about the prospect of reading visit notes, regardless of their demographic or health characteristics.”

“The fact that almost 38,000 patients filled out a lengthy survey shows great interest in this topic,” said Joanne Elmore, who led the Harborview portion of the study.

Across the three sites, more than 90 percent of the patients responding favored making the notes available. Well over half anticipated improved adherence to their medications, 90 percent expected to feel more in control of their care, and four out of five predicted they would take better care of themselves.

“We know a lot more about our cars than our own bodies,” one patient commented. “We leave all of that to the clinicians. I think by having access to our notes, we can take control, and that’s important.”

At Harborview, 97 percent of the participating patients felt that making doctor visit notes available to them was a good idea. Elmore noted that, contrary to expectations, patient enthusiasm for open notes extended almost equally across age, education and health status.

In addition, half of patients in the three-site survey reported that they would consider sharing their notes with other people, including other doctors. One in five (22 percent) anticipated doing so.

“As I help my aging mother with her medical needs, I wish I could see the notes her doctors have made,” wrote one patient. “I think it would help me in caring for her.”

In an accompanying editorial, Thomas W. Feeley of the MD Anderson Cancer, and Kenneth I. Shine of the University of Texas, urged that electronic health records be used to engage participants in all parts of the health care delivery system.

“Expanding who uses the records and how they use them promises to facilitate communication, decrease redundant testing, and enhance our care delivery in ways we have yet to imagine.”

The year-long OpenNotes study period has now ended. Walker and her colleagues at Harborview and the two other sites are eager to learn how the baseline expectations will play out. They are evaluating reports from follow-up surveys completed by participating doctors and patients and analyzing other metrics, such as how often patients reviewed their notes, shared them with others, or corrected errors their doctors may have made.

“They said they wanted the notes. They said they would use them, but we have no idea if they actually went online and read them,” said Walker. “And if they did read them, we don’t know yet what impact that had on the patients or the doctors.”

“Patients want to look into the doctor’s black box, and many doctors are a bit nervous about what they’ll find,” said Tom Delbanco, senior author and co-principal investigator of OpenNotes. “But I expect that over time everyone will benefit enormously from such transparency.”

“While OpenNotes represents a simple change of practice, the effect on the patient-doctor relationship could be profound. The fact that there’s such a gap between how most patients and many doctors expect that patients will handle the information contained in these notes hints at just how profound that effect might be,” added Steve Downs, Robert Wood Johnson Foundation’s Chief Technology and Information Officer.

“Until now,” Elmore said, “there have been few studies of open medical notes, and those have focused on small numbers of patients with defined chronic illnesses. This study helps move the debate beyond the theoretical realm.”

During the course of the one-year study, the patients in the study group at two Harborview Clinics could view all of their primary-care doctor’s notes and records, with a few limited exceptions. Patients could check back with their primary-care doctor or the clinic nurses if they didn’t understand what certain notations, lab reports or shorthand language meant.

“It is not a question of if, but when electronic medical records will be made readily available to all patients,” Elmore said. “We have shown in our study that medical records can be made available to patients in a secure web-based fashion. However, the language in the medical records and the subtleties of clinical care can be complex. We now need to understand how to help patients understand the content so that their access to their records is helpful in improving their health and well-being.”

The study published today in the Annals of Internal Medicine looked at the results of a survey given before patients and their physicians participated in open notes. Next year the researchers will report on the experiences of the patients and their physicians during the one-year Open Notes study.

“We expect to show how patients are using open notes,” Elmore said, “as well as whether this access furthers their understanding and engagement in their care, whether and how they share their notes with others, and importantly, how the open notes impacts doctors’ note writing, time and workflow.

While the official study has ended, UW Medicine is looking into future options for providing patients online access to their electronic medical records through secure portals.

In addition to Walker, Delbanco and Elmore, the study’s co-authors include: Henry Feldman, and Long Ngo at Beth Israel Deaconess; Suzanne G. Leveille,, University of Massachusetts Boston; Jonathan D. Darer and Marc J. Lichtenfeld of Geisinger Health System, Pennsylvania; Shireesha Dhanireddy, Natalia Oster, and Elisabeth Vodicka, all of Harborview Medical Center, Seattle; James D. Ralston, Group Health Research Institute, Seattle; and Stephen E. Ross, University of Colorado Health Sciences Center.
visit the OpenNotes and the Annals of Internal Medicine websites.