Patients Ready to Share Information

Study by RWJF scholar finds most patients would like to enable relatives, caregivers or care providers to access their electronic health records.

    • December 19, 2011

A survey of patients who use an electronic system to manage their personal health information found that most would like to share access to this system with other people involved in their care, such as relatives and providers.

Nearly 18,500 patients in the Veterans Administration (VA) medical system completed the survey devised by Donna M. Zulman, MD, MS, a Robert Wood Johnson Foundation (RWJF) Clinical Scholar (2008-2011). The survey found that patients are “overwhelmingly interested in allowing their caregivers and health care providers to access their online health information and help them manage their health care,” Zulman said.

Zulman said that while she had expected some patient interest in sharing access to electronic personal health records—or PHRs—she was surprised at the level of response. Almost four out of five survey respondents (79 percent) registered interest in sharing access to their PHR with one or more persons of their choosing. Some 62 percent of respondents were interested in giving a spouse or partner access, 38 percent would share access with a child or other family member, and 25 percent would extend access to a health care provider outside the VA system.

Zulman and colleagues described their findings in a study report—“Patient Interest in Sharing Personal Health Record Information: A Web-Based Survey”—that is published in the December 20, 2011, issue of the Annals of Internal Medicine. RWJF and the Veterans Health Administration provided support for the research, which Zulman conducted while in the RWJF Clinical Scholars program at the University of Michigan.

About 10 percent of people in the United States now use electronic PHRs, and most of them use programs offered by their health insurer, health care provider or employer, according to Markle Foundation data cited in Zulman’s study. However, the number of people using PHRs has more than tripled since 2008, and is likely to continue to increase, “particularly if there are demonstrable benefits for patients’ health and quality of care,” the study says. Currently, most PHRs do not give patients the option to share access with others or, if they do permit it, they limit sharing to a single family caregiver (such as a parent of a minor).

The VA medical system uses an electronic PHR system called “My HealtheVet” to let patients access, store and communicate about their personal health care information with providers. Currently, if VA patients want to share their PHR information with someone else, they may print it out or save it to their computer and email it, but they cannot give other parties access to it electronically. In a survey conducted via the My HealtheVet Web site, Zulman asked patients what they might change about PHR access:

  • If they could allow one or more people to see some or all of the information in their PHR, to whom might they grant access? Choices were spouse or partner, child, other family member, unrelated caregiver, friend or neighbor, and non-VA health care provider.
  • What parts of their PHR would they want designated individuals to see—for example, medication lists, laboratory results, or health information the patient had entered?
  • What would they want the designated individuals to be able to do via the PHR—for example, request prescription refills, enter health information, or communicate with providers?

Zulman said the survey response patterns indicate that patients would like the ability to designate specific tasks to specific individuals. “In general, patients were particularly interested in having caregivers perform activities that would help with their day-to-day health care, such as renewing their medications, helping them manage their appointments, and viewing test results for them,” she said. “They are slightly less interested in having other people view their communications with providers, or communicate with providers on their behalf, suggesting they might want more privacy for personal medical details, or there might not be as great a need for caregiver involvement in this aspect of care.”

In the survey, half of the patients who wanted to grant PHR access to a family member other than a spouse said that family member did not live with them. To Zulman, that finding suggests that patients may want a way for children and other relatives to be more familiar with their health information, or more involved in their health care, even if they live far away.

Zulman said the survey found that interest in sharing PHR access ran somewhat higher among men than women, and among patients aged 65 and over compared to those under 65. But while Zulman said she had expected that patients with more health problems might have greater desire to share information, the survey found that interest in sharing PHR access was about the same whether patients rated their health status as poor, excellent or anything in between.

Zulman believes shared access to PHRs might particularly benefit the kinds of patients she has seen a lot of during 6-1/2 years as a clinician in the VA system: patients with multiple, chronic health conditions and thus fairly complicated health care needs. “In terms of supporting those patients and their caregivers, I think technology offers a major opportunity that’s not fully tapped at this time,” she says.

Zulman and her co-authors suggest that additional research on shared PHR access should explore potential liabilities—such as whether it “poses a measurable risk to data security, or causes problems with reconciliation of information from multiple sources”—as well as possible benefits. Allowing patients to share PHR access might reduce “the burden of long-distance caregiving,” the study suggests, and promote information exchange among the various parties “who are most likely to keep our patients healthy and well.” Zulman currently is an Instructor in the Division of General Medical Disciplines at Stanford University and an Investigator at the VA Palo Alto's Center for Health Care Evaluation. Her co-authors on the study are Kim M. Nazi, MA; Carolyn L. Turvey, PhD, MS; Todd H. Wagner, PhD; Susan S. Woods, MD, MPH; and Larry C. An, MD.

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