Patients want access to records.

As President Barack Obama calls for streamlining healthcare 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, the findings suggest patients want full access to all their medical records, are willing to make some privacy concessions in the interest of making their medical records transparent, and expect computers will play a major role in their medical care, even substituting for face-to-face doctor visits.

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"We set out to study patient attitudes toward electronic personal health records and other emerging and future electronic health information technologies," explained 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. "We learned that, for the most part, patients are comfortable with the idea of computers playing a central role in their care."

She added that patients said they not only want computers to bring them customized medical information, they expect 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," said senior author Tom Delbanco, M.D., 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; Portland, Maine; Tampa, Fla., and Denver--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 healthcare 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. Participants were asked how they 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 consumers want computers to take into account their personal profiles in order to bring them customized information and advice," explained 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."

Privacy of healthcare information was of less importance to the groups than might be expected, she added. "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 noted. "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."

Stephen Downs, assistant vice president of the health group at the Robert Wood Johnson Foundation, which supported this research added, "Year after year, people have seen information technology transform one industry after another and, more to the point, transform their everyday experiences. Yet healthcare feels very much the same. This study suggests that people are ready for change--they want a modern healthcare experience."