Patients want full access to all medical records - willing to make privacy concessions

May 18 2009

As President Barack Obama calls for streamlining heath care by fully converting to electronic medical records and as Congress prepares to debate issues of patient privacy, one question has largely gone unasked: What do patients want?

A qualitative study led by a research team at Beth Israel Deaconess Medical Center (BIDMC) helps answer that question. Reported in the June 2009 issue of the Journal of General Internal Medicine (JGIM), the findings provide key insights into consumer preferences, suggesting that patients want full access to all of their medical records, are willing to make some privacy concessions in the interest of making their medical records completely transparent, and that, going forward, fully expect that computers will play a major role in their medical care, even substituting for face-to-face doctor visits.

"We set out to study patient attitudes toward electronic personal health records and other emerging and future electronic health information technologies," explains the study's lead author Jan Walker, RN, MBA, Instructor in Medicine in the Division of General Medicine and Primary Care at BIDMC and Harvard Medical School. "And we learned that, for the most part, patients are very comfortable with the idea of computers playing a central role in their care." In fact, she adds, patients said they not only want computers to bring them customized medical information, they fully expect that in the future they will be able to rely on electronic technology for many routine medical issues.

"Patients know how busy their doctors are and they want to reserve us for what they really need us for - treating serious illness and conditions," adds senior author Tom Delbanco, MD, the Richard and Florence Koplow-James Tullis Professor of General Medicine and Primary Care at Harvard Medical School and BIDMC. "They may be more than happy to rely on computer protocols and 'faceless doctors' to help them manage garden-variety medical problems."

Focus groups were held in four cities: Boston, MA; Portland, ME; Tampa, FL; and Denver, CO. The locations were selected to represent various geographic areas, to include both rural and urban populations and to incorporate ethnic and cultural diversity. Six of the eight groups (consisting of nine to 12 participants each) were made up of consumers. The last two groups were made up of health care professionals from Boston and Denver, assembled to provide their perspectives on the role of health information technology and to compare their opinions with those of consumers. In each case, participants were asked how they currently organize the information they need to manage their health and medical care, and explored how they would ideally like to manage and use this information, including how technologies could address any gaps.

"The discussions showed that, for the most part, consumers want computers to take into account their personal profiles in order to bring them customized information and advice," explains Walker. "They also expect that technologies will 'watch' over them, monitoring their health and giving them real-time feedback, including communicating with clinicians when needed. Participants also said they expect computers to act as 'personal coaches,' and to foster self care."

Strikingly, she adds, privacy of health care information was of less importance to the groups than might be expected. "It seems that as the population ages and finds itself facing more illness and serious medical conditions, privacy of health information becomes much less important to patients than it is when they are healthy," she notes. "Patients are willing to trade some privacy in order to have records fully available in emergency settings and available to new caregivers as well as to multiple clinicians."

New health technologies offer patients online access to parts of electronic medical records (EMRs), options for maintaining their personal histories, and support for day-to-day management of chronic illness, the authors note. But when it comes to the future design and utility of these and other elements of care, teams of software engineers, graphic artists and clinicians rarely solicit patient perspectives.

"The patient's view is critical," adds Delbanco. "We health care professionals think we know what it is, but we're often too arrogant to ask. We want our healthcare system to be as patient-centered as possible, and patients have broad and deep experience with technology in other sectors of their lives."

Adds Stephen Downs, assistant vice president of the health group at the Robert Wood Johnson Foundation which supported this research through a grant from its Pioneer Portfolio, "Year after year, people have seen information technology transform one industry after another and, more to the point, transform their everyday experiences. This is the age of the iPhone, Facebook and Google Maps, yet health care feels very much the same. This study suggests that people are ready for change - they want a modern health care experience." The Pioneer Portfolio supports innovative ideas that may lead to significant breakthroughs in the future of health and health care.