Almost four in five Veterans Health Administration patients who use personal electronic medical records would like to be able to share them with someone outside the VA system, a Stanford University survey has found.
"We suspected that many patients would be interested in sharing their health information, but the overwhelming response was surprising," Stanford's Donna Zulman, an investigator at the VA Palo Alto Health Care System's Center for Health Care Evaluation, said via e-mail.
Two studies published on Monday in the Annals of Internal Medicine suggest that patients are far less worried about losing medical privacy than doctors and policymakers are.
"One hears a lot about privacy and data security when it comes to health records, and this has been shown to be a concern for many patients," Zulman said. "However, it is clear from our findings that patients desire the ability to share their health information."
Zulman noted that sharing medical records may be particularly important to patients with chronic conditions, who often rely on multiple people to help them manage their care. Seventeen percent of the veterans surveyed would like to share their information with a family member who doesn't live with them, the report found.
Expanding electronic health record-keeping is a provision of health care legislation and a priority for the Obama administration. However, critics say that making records electronic and sharing them widely could undermine patient privacy and data security.
Digital health care data security breaches have increased 32 percent from last year, The New York Times reported on Monday. "Those breaches cost the industry an estimated $6.5 billion last year," according to the newspaper.
But two studies published in Annals of Internal Medicine this week--Zulman's and another, led by Harvard Medical School's Jan Walker--suggest that patients' desire to have access to and share their private health information might outweigh their privacy concerns. Walker's study also suggests that doctors may have more reservations about sharing patient information than patients themselves do.
The two studies looked at two different categories of electronic records. Zulman's survey looked at personal health records, or PHRs, a tool that helps patients keep up with lab results, prescriptions, appointments, and the like. The second survey asked patients and physicians if they'd like to access and share doctor's office notes online.
Zulman's team asked 18,471 Veterans Health Administration patients who use the VA's PHR web tool, My HealtheVet, if they'd like to be able to share their personal health information with a family member, caregiver, or outside provider.
Seventy-nine percent of those surveyed, almost all men over 50, said they'd like to be able to share their records with at least one other person. More than half wanted to be able to share their records with a spouse or partner, 23 percent wanted to grant access to a child, and 15 percent to another family member. Seven percent would share with an unrelated caregiver, and two percent with a friend or neighbor.
While patients wanted to share, they didn't necessarily want to share everything. "Respondents were more interested in sharing access to medication lists, appointment information, and laboratory and test results, than to patient-entered health information or communications with providers," the researchers wrote.
The second study, led by Walker, found that 22 percent of patients would share doctors' office notes with a third party, mostly a family member. However, Walker's study also registered privacy concerns among patients, and revealed an enthusiasm gulf between patients and physicians.
Walkers' team asked primary-care physicians and patients in three states if they'd like to enter a program that would give patients access to their doctors' notes taken during office visits. More than 170 doctors and 37,856 patients completed the survey. More than 90 percent of patients surveyed said they thought sharing doctors' office notes online was a good idea. Still, "thirty-five percent of patients were concerned about their privacy," the study found. Doctors had more reservations, Walker's team reported. They found 64 percent of doctors invited to participate in sharing their notes online volunteered to do so. One mark of the gap between physicians and patients: More than half of participating doctors said that sharing visit notes would make their patients worry more, but only 12 percent to 16 percent of patients shared that concern.
An important caveat for both studies: Patients surveyed were already using electronic patient portals online. While electronic health records have become increasingly common, such records are far from universal--and few Americans currently have electronic access to their records, let alone the ability to share electronic records with friends or family members.
Just 57 percent of office-based physicians used electronic medical records in 2011, according to Centers for Disease Control and Prevention data. Only 10 percent of Americans use personal health records, Zulman's study noted.