Five years ago, Harvard researchers convinced 100 primary care physicians to try something novel — share the notes they made during and after office visits with their patients. Patients already had the legal right to access their records, but it involved a lot of request forms and tedious faxing, and few knew about or took advantage of their rights. Moreover, doctors were reluctant to impart their own notes, even as secure email messaging had made sharing lab test results, medication records, and other parts of the medical record easier.
The Harvard trial was therefore groundbreaking, and its main finding — that patients will actually read and learn from their doctors’ notes — catalyzed a national movement known as OpenNotes. Today, some 6 million Americans have easy access to their medical records, including clinical notes, through secure web portals. So what has this open relationship meant for doctors and their patients?
Promoting Mutual Understanding
To find out, Commonwealth Fund–supported researchers recently surveyed patients with chronic illnesses whose doctors were early adopters of OpenNotes. They chose these patients because dealing with conditions like diabetes or heart failure requires having a clear understanding of the disease and how to control it, and it’s easy for patients to get overwhelmed. Doctors are partially to blame, says Diane Brockmeyer, M.D., an internist at Beth Israel Deaconess Medical Center in Boston and a participant in the OpenNotes pilot. “Instead of telling people two or three things during a visit, we commonly tell them five or 10 or even 15 things they’re supposed to change.” Research has found that patients often forget much of their doctors’ advice, or get it wrong.
“It’s hard to be a patient, and we as doctors are not always as clear as we might be. Instead of telling people two to three things during a visit, we commonly tell them five or 10 or even 15 things they’re supposed to change.”
— Diane Brockmeyer, M.D., an internist at the Beth Israel Deaconess Medical Center and participant in the Open Notes pilot
The researchers found that letting patients read their doctors’ clinical notes helped clear up some misunderstandings. Some people discovered that their doctor had misunderstood something they said. Others realized they hadn’t been taking the right dosages of medications, or were taking them at the wrong time of day. Many said that reading the notes made them feel more in control of their health and motivated to stay well.
A minority still had concerns about their private information falling into the wrong hands. To help reassure such patients, Beth Israel gives doctors the ability to make particularly sensitive information — say about domestic abuse — more secure. When this is done, providers other than the patient’s primary care doctor have to log in an additional time to read such notes, and the primary care doctor receives an email when they do.
Broadening the Conversation
Brockmeyer was late to join the OpenNotes pilot even though she thought sharing her notes was generally a good idea. “As a health care worker I’ve always had access to my records and I read them,” she says. But she worried it would create extra work, with more patients calling to ask questions. Her concerns are common. Many doctors worry about having to water down their clinical observations so as not to alarm or confuse patients. (“SOB” in medical lingo is not an insult, for instance; it’s an abbreviation for “shortness of breath.”)
Brockmeyer says sharing hasn’t added much more work, though it has led her to change the way she writes notes, in ways that are sometimes valuable. Whereas before she may have noted a patient’s alcoholism and her reminder to him to cut back or quit drinking, today she’s more likely to document the back and forth. “I might say ‘We had a discussion today about ways to make change and the patient expressed interest in trying to cut back, but worried about his ability to do so,’” she explains. This kind of note not only documents the patient’s perspective, it provides a reminder for his doctor to continue to offer help.
Some patients have said that it can be useful to have doctors write something negative in their notes. In the original pilot, one patient said she was motivated to lose weight after reading her doctor’s description of her as “obese.”
Using a $10 million grant (provided by the Cambia Health Foundation, Gordon and Betty Moore Foundation, Peterson Center on Healthcare, and the Robert Wood Johnson Foundation), advocates are working to spread adoption of OpenNotes to more primary care doctors as well as specialists, surgeons, mental health providers, and other clinicians. With about half of all doctors using electronic medical records, the technical barriers to sharing are going away. More and more consumers, too, are demanding access, and new federal guidelines mandating that hospitals and physicians respond to patients’ requests for their records within 30 days should help.
As the health care transparency movement spreads, efforts are needed to promote equal access: recent federal data found that in 2014 people with low income (under $25,000 annually) or no college degree were only half as likely as those with high income ($100,000 or more annually) or a college degree to be offered access to their medical records in 2014.
But the evidence to date suggests that OpenNotes can spark more open and informed conversations among doctors and patients and — as part of broader efforts to encourage patients to become active participants in their care — may lead to fewer medical errors and better care.