Patients more eager to have open records than physicians

Most patients would like electronic access to their medical records, and a substantial proportion would also like to share that access with others, according to two new studies.

In the first study, more than 30,000 patients and 250 physicians were surveyed at primary care practices (located in Massachusetts, Pennsylvania and Washington state) participating in the OpenNotes research and demonstration project. The survey respondents were asked about their expectations and attitudes about physicians' notes being readable by patients. The surveys were conducted after physicians had decided whether or not to participate in the OpenNotes demonstration, but before they and their patients had experienced the system.

Overall, across the three sites, 92% to 97% of patients and 69% to 81% of physicians participating in the project thought open visit notes were a good idea. Among nonparticipating physicians, only 16% to 33% thought it was a good idea. Participating physicians were more likely to anticipate improved communication than nonparticipants (74% to 92% vs. 45% to 67%), while nonparticipants expected greater worry among patients (88% to 92% vs. 50% to 58%) and more patient questions outside visits (83% to 84% vs. 36% to 50%). Only 12% to 16% of patients were concerned about greater worry and 22% anticipated sharing their visit notes with others, including other physicians.

Another study, also published in the Dec. 20 Annals of Internal Medicine, found an even higher rate of patient interest in sharing health records with others. These researchers surveyed more than 18,000 users of the Veterans Administration's electronic personal health record system. They found that 79% of respondents were interested in sharing access to their record—most often with a spouse (62%), followed by a non-VA clinician (25%), a child (23%), and another family member (15%). Participants were also asked what parts of their record they would like to share, and the most popular responses were medication lists, scheduled appointments and lab results.

The authors of the latter study noted that under current systems, sharing a limited amount of information from a personal health record is not easy. They called for health care systems to explore the possibilities of allowing patients to securely share their access in order to improve information exchange. The VA has recently completed a pilot of such a system, which was well received, they noted. The OpenNotes survey was also the first step in a pilot project, which will provide evidence about how the reality of open records compares to physicians' and patients' expectations. An accompanying editorial by physicians at MD Anderson Cancer Center said that patient access to records there has worked out well, although many questions remain about the long-term uses and effects of these systems.