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Patients eager to share electronic health records with others, Stanford/VA survey shows

- By Tanya Lewis

Donna Zulman

Donna Zulman

Imagine an elderly man who needs support managing his diabetes, but whose closest relative is a son living across the country. Despite their distance, the son wants to help his father keep track of his blood sugar and manage his medications. What if the father could share his health information easily and securely online? With the click of a mouse, the son could see blood test results, refill prescriptions or ask to speak with his father’s doctor.

The patients have spoken: Nearly 80 percent of Veterans Affairs patients who participated in a survey would like to share their electronic health information with family members, caregivers and outside providers, according to a new study led by a researcher at the Stanford University School of Medicine and the VA Palo Alto Health Care System.

“Patients were overwhelmingly interested in allowing their caregivers and health-care providers to access their online health information and help them manage their health care,” said Donna Zulman, MD, an instructor of medicine at Stanford and an investigator at the VAPAHCS Center for Health Care Evaluation. She is first author of the study, which was published in the Dec. 20 issue of the Annals of Internal Medicine.

Large health-care systems are increasingly using electronic personal health records, or PHRs, to provide information to patients and engage them in their care. In contrast to the electronic medical record, which is primarily for the health-care provider or physician, the PHR contains information specifically for the patient, such as lab results, prescriptions and scheduled appointments.

Currently, few PHR systems allow patients to share access to their online personal health information with other people, such as family members. The VA medical system, which uses an electronic record system called “My HealtheVet,” wanted to know what their patients thought about sharing PHR access.

“Government agencies and others are making considerable efforts to use newer technologies — including Web-based platforms — to enhance communication among patients, their families and their providers in order to enable all involved to make the best health-care decisions possible,” said Joel Kupersmith, MD, chief research and development officer for the Veterans Health Administration, who was not involved in the research. “This study shows that a majority of veterans who use My HealtheVet are strongly behind these efforts.”

An accompanying editorial in the journal cites Zulman’s paper and a related study in the same issue as evidence that supports facilitating patient access to their digital files to improve transparency in health care. “Electronic health records should be used to engage patients, their caregivers, and others in the health-care delivery system,” writes Thomas Feeley, MD, of the University of Texas M.D. Anderson Cancer Center, and Kenneth Shine, MD, of the University of Texas System, in the editorial. “Expanding who uses the records and how they use them promises to facilitate communication, decrease redundant testing and enhance our care delivery in ways we have yet to imagine.”

Zulman and her co-authors surveyed a random sample of 18,000 My HealtheVet users through the online record system between July and October 2010. They asked users, “If you could allow one or more people to see some or all of your information in your My HealtheVet PHR, which of the following people might you choose?” Possible options included a spouse or partner, child, other family member, unrelated caregiver, friend or neighbor, non-VA health-care provider and none.

Almost 80 percent of survey respondents expressed interest in sharing access to their records with one or more individuals (62 percent with a spouse/partner, 33 percent with another family member and 25 percent with an outside health-care provider). Zulman said she expected there would be interest, but the dramatic response was surprising.

Why don’t PHR systems already allow sharing? Mainly because of privacy and security issues, said Zulman. While Americans report high satisfaction with electronic PHRs, more than 60 percent of people are concerned with the privacy of their information, according to research by the Markle Foundation.

VA patients can share health records non-electronically, but they’re required to sign a form authorizing release of the records and must either have the records faxed to the designated person or physically take the records to them. Alternatively, patients can download certain types of personal health information from My HealtheVetand share their records manually. “These procedures have their own inherent data security risks,” said Zulman.

She said the veteran patient population tends to have multiple chronic conditions, so “it would be especially beneficial for these complex patients to be able to share their information with the people who are helping them.” Additionally, many veterans live far from family members who might provide support. Almost half of those respondents wishing to share their records with a family member other than a spouse or partner reported the specified family member did not live with them.

The majority of My HealtheVetusers are men, which is representative of the VA population in general. Zulman and her colleagues found that men and women participating in the survey expressed similarly high interest in sharing health records (with slightly more men, proportionally). Older adults expressed marginally more interest than younger and middle-aged adults.

Zulman noted that the results of this study cannot necessarily be generalized to non-PHR users, or patients in other health-care systems. While some other systems allow patients to designate an individual who may access their PHR, such access is often limited to a single family caregiver or to parents of minors.

The study was co-authored by Todd Wagner, PhD, consulting associate professor of health research and policy at Stanford and a health economist with the VAPAHCS. The other co-authors are from offices of the Department of Veterans Affairs in Washington, DC, Iowa and Oregon, and from the University of Michigan.

The study was funded by the Veterans Health Administration and the Robert Wood Johnson Foundation Clinical Scholars program.

Tanya Lewis is a science-writing intern in the Office of Communication & Public Affairs.

Stanford Medicine integrates research, medical education and health care at its three institutions - Stanford University School of Medicine, Stanford Health Care (formerly Stanford Hospital & Clinics), and Lucile Packard Children's Hospital Stanford. For more information, please visit the Office of Communication & Public Affairs site at

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