The law says that rheumatology patients—and all patients—have the right to see and have copies of their medical records, but patients often don’t know the extent of the information within those records, let alone request to see their full files. And their doctors, for whatever reason, generally don’t encourage them to do so.
However, technology may be changing that.
With the growing use of electronic health records—and the availability of portals through which patients could get access to their medical records from their home computers using a username and password—it is becoming easier for patients to have quick access to their medical files.
That’s much more user-friendly than the current system, which can involve the patient coming into the doctor’s office and reviewing the file with a doctor or nurse, or the patient calling and recalling an office before copies are made.
But the easy access to medical records stemming from technological advances has given rise to questions about the medical benefits to such easy access and about which records rheumatologists and other doctors feel comfortable having patients see and read with the click of a mouse. These questions are now being explored by researchers in the U.S. and Europe.
In the OpenNotes project, primary care physicians (PCPs) with three institutions—Beth Israel Deaconess Medical Center in Boston, the integrated Geisinger Health System in rural Pennsylvania, and Seattle’s Harborview Medical Center, which serves a large economically challenged population—have given patients home access to probably the most sensitive of medical records: the doctor’s clinical notes.
Lead researcher Tom Delbanco, MD, professor of medicine at Harvard Medical School and Beth Israel, says that, until now, notes were the only record at Beth Israel not accessible through a Web portal. The medical center was already ahead of the national curve, but Dr. Delbanco felt they may not be far enough ahead. “What we’re doing is going whole hog and basically saying, ‘Why should that be the doctor’s black box? Why shouldn’t patients have a right to read what we’re thinking? After all, it’s their body,’ ” Dr. Delbanco says.
What Doctors, Patients Think
Results from the first year of this practice haven’t been released yet—publication is expected in the fall—but the results of a survey done at the study’s start show that there’s trepidation over the practice.
A total of 114 PCPs across the three institutions chose to participate, while 140 turned the invitation down. Sixty-nine percent to 81% of the participating PCPs, compared with 16% to 33% of nonparticipating PCPs, thought open visit notes was a good idea. And 92% to 97% of patients thought it was.
Among the participating doctors, 74% to 92% thought it would lead to better communication and patient education. Only 45% to 67% of nonparticipating doctors thought it would. And, while 50% to 58% of participating doctors thought it would lead to more worry among patients, 88% to 92% of nonparticipating doctors thought it would.
Patient enthusiasm for the idea crossed age, education, and health status boundaries, the survey found.
So far, so good, Dr. Delbanco says. “No doctor I know has tried to kill me as a result,” he says.
Access to the notes means that patients don’t have to rely only on their memory, he points out. “Patients remember very little of what happened in the doctor’s office, and the best time to educate a patient is before a visit and after a visit,” he says. “And what better way than to be able to go home and at leisure open up your record, look it up?”
A movement towards more open notes might lead to an evolution of the notes themselves, Dr. Delbanco says. “It’s a very tall order for one note to serve all those different masters … the doctor’s memory, consultants, insurers, administrators, quality-of-care people—and now we’re adding the patient,” he says.
Overall, he says, open notes is like a “new medicine.” “It’s designed for the greater good of many people,” he says. “We suspect it’s a way to involve patients much more actively in their care, which is the main thing that moves us”—even though, for some patients, there may be contraindications.
What Other Research Has Found
A recent study done in the Netherlands—where, like in the United States, portal access is sometimes offered but is not widespread—set out to gauge rheumatology health professionals’ interest in, and concerns about, patients’ home access to their records.1
Researchers interviewed nine rheumatology nurses and nurse practitioners and 13 rheumatology physicians, stopping when they found they were getting no new valuable information.
The health professionals said they thought there would be advantages, such as enhancement of patient participation in their treatment, increased knowledge and self-management, and better interaction between providers and patients. But they also anticipated problems with patient interpretation, extra workload, a change in what is covered in consults, and even, potentially, a disrupted patient–provider interaction. The respondents also came to a consensus on preconditions: security must be optimal, there should a lag time in the release of lab results, and no access to clinical notes.
Previous studies had found great interest among Dutch rheumatology patients in having home access to their medical files.
Rosalie van der Vaart, the study’s lead researcher and a PhD student at the Arthritis Centre Twenty and the Department of Psychology, Health, and Technology at the University of Twente, says that a main concern was generating unnecessary worry for patients, especially on lab results that might not be relevant and might not be discussed during doctor visits. “That’s why health professionals resisted putting them all online, as those could create fear or stress in patients because they wouldn’t know what to do with those numbers,” van der Vaart says.
Releasing the clinical notes was also a concern. “Most of the health professionals that I spoke to were quite hesitant to release those notes because often it concerned doctors’ treatment considerations that still needed some research before a conclusion could be made,” she says.
Some of the rheumatology professionals interviewed said they might be willing to allow access but would still want “a little corner in the record” for their thoughts about the patient on topics that might be sensitive, such as adherence to doctor recommendations. Patients in the study are now being offered portal access to certain records, including medication, medication history, diagnosis, and certain lab results. The effects on patient care are being tracked.
Any efforts to expand home access to medical records is likely to continue to meet resistance. Susan Goodman, MD, assistant professor of medicine at Weill Cornell Medical College and assistant attending rheumatologist and internist at the Hospital for Special Surgery in New York, says the primary function of the note has been for physicians to communicate with one another. She says it’s unreasonable to expect a patient to understand the notes when the better part of two years of medical school is spent learning medical vocabulary.
“It’s clearly changing the function of the note,” she says. “There are certain terms that are horribly frightening.”
Thomas Collins is a freelance medical writer based in Florida.
