Patients want to see docs' notes: study

Most patients are enthusiastic about viewing and sharing their doctors' notes about them, while doctors—perhaps predictably—are more wary of the practice, according to two studies published in the Annals of Internal Medicine.

One study examined attitudes of patients and physicians at Beth Deaconess Israel Medical Center in Boston; Geisinger Health System in rural Pennsylvania; and Harborview Medical Center, a county hospital in Seattle. The other study surveyed users of the My HealtheVet U.S. Veterans Affairs Department Web-based personal health record.

In the first study, Beth Israel Deaconess and Geisinger patients already had access to test results, medication lists, appointment schedules, prescriptions, referrals and other information via a secured online patient portal, while Harborview's portal was being launched as the same time the note-sharing test, known as OpenNotes, was started. There was a fairly even distribution among the 173 primary-care physicians responding to the survey, with 31% from Beth Israel Deaconess, 45% from Geisinger and 19% from Harborview. For the nearly 38,000 patients, however, 80% of respondents were from Geisinger; 19% were from Beth Israel Deaconess; and less than 1% were from Harborview.

"Patients expressed considerable enthusiasm and few fears, anticipating both improved understanding and more involvement in care," the researchers wrote. "The enthusiasm of patients exceeded our expectations; most of them were overwhelmingly positive about the prospect of reading visit notes, regardless of demographic or health characteristics."

Physicians, however, were concerned that letting patients read their notes would mean longer visits and that they would have more demands on their time between visits. They also expressed fears about sharing candid thoughts concerning patients' mental health, substance abuse, cancer and obesity.

"Patients want to look into the doctor's black box, and many doctors are a bit nervous about what they’ll find," Dr. Tom Delbanco, one of the researchers from Beth Israel Deaconess, said in a news release. "But I expect that over time everyone will benefit enormously from such transparency."

The demographics of the participants in the VA study were also somewhat skewed: Almost all of the 18,471 respondents were men (92%), and most were between ages 50 and 64 (50.6%) or 65 and older 39.3%. While privacy was cited as a high priority, 79% expressed interest in sharing their health information with a partner or spouse, child or other family member, friend or a healthcare provider outside the VA system.

"Many patients, especially those with chronic conditions and persons in poor health, also have family members and friends who are intimately involved in their health and healthcare," the researchers wrote. "Many older persons also have adult children living outside the home who could provide substantial support if they could access specific, accurate information about their parents' health."

In an accompanying editorial written by physicians from the University of Texas (Houston and Austin), the example of a similar program at the University of Texas M.D. Anderson Cancer Center was cited. Although some physicians complain about having to explain what they wrote, it was stated in the editorial that feedback has been positive and that patients "are more informed about their care plan and diagnostic results and ask smarter, more focused questions."

The authors recommended further study and continued monitoring of the effects of "opening the door to levels of patient engagement and care coordination not previously possible." They added, "As younger generations embrace technology, one of the oldest tools in medicine, the doctor's note, is in its infancy of reform."