(Reuters Health) - - When Stacey Whiteman was diagnosed with multiple sclerosis two years ago, she didn’t realize the toughest challenge would be its impact on her brain. The 53-year-old from Massachusetts was forced to quit work as an executive assistant after becoming easily confused and prone to forget, even about priorities like doctor appointments.
When her physician suggested OpenNotes, an electronic portal allowing patients full access to their medical records, including doctors’ notes, Whiteman was eager to log on.
“For somebody like me who has a hard time processing things, I need this convenience,” she said. Whiteman now refers to OpenNotes daily, to review what happened during appointments, be reminded of future ones and check lab results.
Patient access to physician notes, historically rare, has led to more collaborative doctor-patient relationships and more engaged health care consumers, according to a new paper online February 10 in the British Medical Journal.
“Regardless of one’s competence, health information is often quite opaque,” said coauthor Michael Meltsner, a professor at Northeastern University School of Law in Boston.
Meltsner and his two coauthors, Dr. Tom Delbanco and Jan Walker, both at Beth Israel Deaconess Medical Center in Boston, evaluated data on 19,000 patients and 105 primary care physicians using OpenNotes at three U.S. hospitals.
After one year, 99% of patients wanted to continue accessing notes. Despite initial concerns among physicians about additional work, none decided to discontinue use.
“It’s like oysters. Once you like oysters, you hang in there with them,” Delbanco said. “But it’s an acquired taste.”
According to the paper, patients described “a new understanding of the importance of medications and more motivation to adhere to treatment.” They shared notes with caregivers and “reminded harried doctors about follow-up that had not been completed.”
The participating institutions, Beth Israel Deaconess, Geisinger Health System in rural Pennsylvania, and Seattle’s Harborview Medical Center, have since expanded OpenNotes use throughout specialty and primary care. Overall, five million Americans now have access to notes, up from 20,000 two years ago.
Delbanco predicts access will soon be common nationwide. Electronic medical record software suppliers, such as Epic, are building note access into products. Health institutions may opt for or against activation.
The most surprising finding, Delbanco said, is that elderly patients and those with little education were as interested in reading notes as the young and well educated.
“We thought this would be a yuppie internet,” he said. However, at Harborview, a safety-net institution, patients read online notes by logging on to computers at public libraries and hospital kiosks.
“Patients have a right to information about themselves and the right to be told the truth,” said bioethicist Nancy Berlinger of The Hastings Center.
Note sharing can be particularly beneficial for patients with serious conditions like cancer, Berlinger said, as emotions are often high during appointments in which multiple issues are addressed and treatment plans formulated.
“A lot of these patients’ lives are happening outside of the clinic,” Berlinger said. “People can take in information in the privacy of their own homes.”
Berlinger said she questions how usable OpenNotes would be for non-English speaking patients and for those with dementia.
According to Delbanco, OpenNotes is like a new medicine, good for some and contraindicated in others. “Every medicine is designed to help some people, and OpenNotes is no exception,” he said.
Rita Charon, an internist and director of the program in narrative medicine at Columbia University in New York City, said any program opening the flow of information between clinicians and patients is beneficial.
“It’s easy to do, and something many of us do routinely,” Charon said. “It lets the patient know what I think, and it reminds me to write in English and not in abbreviations. It reminds me to faithfully repeat what happened in that twenty minutes.”
Measuring outcomes, she said, would help note-sharing practices to spread.
“This work has helped us see the important feasibility parts, that patients will put time into reading what we write, and that it does something,” Charon said. “Now we have to ask what does it do?”
Delbanco acknowledges that health outcomes are still unknown and difficult to evaluate.
However, he said, “We know that engaged patients have better outcomes.”