Survey: Patients want more open medical records

A striking majority of patients would like to share information in their electronic records and see what their physicians are saying about them, according to a pair of studies published in the Dec. 20 issue of the Annals of Internal Medicine.

The first survey, "Patient Interest in Sharing Personal Health Record Information," found that 79 percent of the 18,000 users of My HealtheVet--the U.S. Department of Veterans Affairs' (VA) electronic personal health record (PHR) system--would like to share the information in their personal health record with someone outside of the VA system.

Of those willing to provide access to others, 62 percent wanted to grant access to their spouse or partner, 23 percent to one of their children, 15 percent to another family member and 7 percent to an unrelated caregiver. Of those who indicated that they were eager to share their records with a family member other than a spouse or partner, 47 percent reported that the family member didn't live with the respondent, and 17 percent were long-distance family members.

Respondents particularly were interested in sharing their medication lists, lab and other test results, and medical appointment schedules. They also wanted to delegate specific PHR activities to others, such as requesting prescription refills, communicating with providers and scheduling appointments.

"Physicians and hospitals are implementing electronic personal health record systems with little understanding of how patients want their information used," the researchers said.

The results were corroborated in the second study, "Inviting Patients to Read their Doctors' Notes: Patients and Doctors Look Ahead."  In that survey of patients and primary care physicians (PCPs) from three states, a whopping 92 to 97 percent of patients using electronic patient portals were eager to view their physicians' open visit notes.

Perhaps not surprisingly, docs were less enthusiastic. The survey found that between 69 and 81 percent of physicians participating in the portal project thought it was a "good idea," as opposed to 16 to 33 percent of nonparticipants. Moreover, between 50 and 58 percent of participating PCPs, and 88 and 92 percent of nonparticipating docs, expected that open notes would make patients worry more about their health. 

The authors in both studies noted that electronic information sharing could enhance communication between patient and physician and among the network of people involved in a patient's care.

To learn more:
- here's the veterans survey (.pdf)
- check out the PCP survey 
- read this article