If you’re like most patients in the U.S., you haven’t a clue what your doctor writes about you in your health record.
Despite a move toward more transparency in medicine, only about 3 percent of the U.S. population currently has ready access to notes written in their charts. And most physicians polled are still resistant to the idea. “Two-thirds of doctors still do not feel comfortable in giving access to the notes of their visit to the patients,” says Dr. Eric Topol, a cardiologist and professor of genomics at The Scripps Research Institute, a nonprofit medical research organization based in La Jolla, California.
HIPAA, or the Health Insurance Portability and Accountability Act of 1996, gives patients the legal right to review their medical record. This includes doctor’s notes, though not notes kept separate from the medical record, as mental health observations sometimes are. But only a fraction of patients have access to their doctors’ notes online, like through medical organizations’ patient portals, which increasingly offer patients a way to access their lab test results or other information about their care online.
However, a not-for-profit national initiative called OpenNotes has sought to make it easier for patients to gain access to notes — and for doctors to share them. As a result, today, about 80 health care institutions, from Beth Israel Deaconess Medical Center in Boston — a site where the concept was first tested — to Cleveland Clinic and the Veteran’s Health Administration allow patients access to their clinicians’ notes about them online. In total, approximately 12.7 million patients now have access to OpenNotes, says Catherine DesRoches, executive director of OpenNotes, which is funded by philanthropic grants.
[See: 12 Questions to Ask Before Discharge.]
DesRoches and OpenNotes co-founder Dr. Tom Delbanco have set a goal of ensuring 50 million patients have access to their clinicians’ notes through the initiative by 2020.
There’s no reason for doctors to write notes about patients without a patient being privy to what’s written, since patients can benefit by seeing what their physicians write and being fully informed, says Delbanco, a professor of medicine at Harvard Medical School.
Based on early research done when the concept was still being tested — surveying patients a year after they’d begun using OpenNotes — most patients reported they felt more in control of their care, were more educated and better prepared for future visits. “They certainly remembered what happened in the visit better,” Delbanco says. That’s of no small consequence, since it’s well-documented that patients tend to forget or misremember the majority of information doctors share in person during medical visits. Experts say giving patients full access to their medical records and doctors’ notes can improve both patient engagement and follow through, as well. And 70 percent of surveyed patients who’d been using OpenNotes and who were on medicine said they were actually doing better at taking their medications as prescribed, Delbanco says.
Meanwhile, doctors’ concerns about sharing their notes — ranging from whether patients questioning notes would increase physician workload to whether reading doctors’ notes would contribute to patient anxiety — have been systematically, carefully studied and found not to be at issue. Yet most physicians are still reluctant to share notes, Topol says. “Doctors still feel it’s their property — that they created the notes, and that the patients aren’t entitled to the notes — and this is an outgrowth of paternalism — medical paternalism” — as well as the unfounded fears related to sharing the notes, he says.
The lack of transparency misses another important opportunity, he adds, by keeping patients from being able to set their medical records straight. “Office notes are riddled with mistakes that could be easily cleaned up by patients. They know what medicines they’re taking, largely, and they know what conditions [they have],” he says. Research has found that often information in medical records and physicians notes is incorrect. “Notes are fraught with errors when they’ve been audited,” Topol says. “So why not have the patients involved? It’s their care, it’s their body. They paid for the visit one way or another. But yet they have no work product.”
[See: HIPAA: Protecting Your Health Information.]
Mary Ellen Sexton of Jefferson Township, Pennsylvania, says she hasn’t had to suggest any changes or corrections to her notes, but along with her husband, Lynn, she appreciates being able to see doctors’ notes through OpenNotes. The Sextons go to primary care provider Dr. Richard Martin, a family physician at the community clinic Geisinger Mt. Pleasant in Scranton, Pennsylvania, which is part of Geisinger Health System, an early adopter of OpenNotes.
Lynn, 84, who had a heart attack decades ago, says being able to access details through his medical record and OpenNotes post-visit improves the overall understanding he and his wife have of what’s going on with his care. “If we go to the cardiologist, everything is on there. The [tests] that he’s had, echocardiograms or stress tests — everything’s one there,” adds 81-year-old Mary Ellen; that includes an explanation of what the test was for and the cardiologist’s notes. “Even if Dr. Martin isn’t in and we have to go to somebody else, because Lynn has an emergency, all those notes are on there, too — exactly what they did or what they ordered or new medication,” she says. “It’s fantastic.”
The notes can help with recall following medical visits, particularly for older patients who have multiple chronic conditions that require much to be covered in a short office visit, Martin says “If somebody’s diabetic and their blood sugars aren’t well-controlled, I’ll get specific about things they need to avoid in their diet,” Martin says. “They may not remember everything I tell them. So they can go back to my note, and refresh their memory.”
For patients who don’t have ready access to their doctors’ notes online, experts say it’s still worth putting in a request for those notes. “Ask your doctor for a copy. Doctors have been giving patients copies of notes for many years on a one-by-one basis,” Delbanco says. “Encourage your doctor to give it to you, and tell him or her if he doesn’t, you’ll go somewhere else for care.”
Gaining full access to your health record may require going through a health organization’s patient records department, which can take time. Patients may even be charged administrative or copying fees. But it’s worth putting in the effort, even if patients shouldn’t have to do that, experts say. Request electronic transmission if possible. “There are certainly practices throughout the country where patients are very comfortable and they routinely get their notes from the doctor, whether it be by email or hard copy, for their files,” Topol says. “There’s just very few — that’s the problem,” he says. “Every patient should have their notes as far as I’m concerned.”
[See: 5 Common Preventable Medical Errors.]
Delbanco agrees. Though the vast majority of patients still don’t see their doctors’ notes, he’s encouraged that the growth of OpenNotes means an increasing number of patients are able to read what their doctors write about them. “There’s no question in my mind that it will become the standard of care over time,” he says. “It’s only a matter of when — not if.”
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Do You Have Access to Your Doctors? Notes About You? originally appeared on usnews.com
