One day this spring, an elderly patient of mine became upset with me because, she said, I had betrayed her trust.
The issue was a short note I had written in her medical record about her difficult relationship with her child. The note was a reminder for me and anybody else in the hospital where I worked that the patient didn’t have anyone who could accompany her to appointments.
A specialist my patient was also seeing was using an electronic record system that automatically put my note into his. When he shared his notes with her, my patient became angry when she saw what I had written. I thought that information was between us, she said. The note seemed disloyal to her, so at her request, I deleted it.
The exchange left me feeling uneasy. The information might be important if she were hospitalized or in an accident, but she also has the right to decide what she wants her doctors to know.
As more and more doctors’ offices give patients electronic access to their medical records, both patients and their physicians are asking: Exactly how much of your medical record should you get to see?
Elsewhere in the world, patient ownership of medical records is the norm. When I spent a month in Botswana as a medical resident, patients walked into the clinic carrying their own paper charts, which I filled out during the visit and then handed back to them.
Theoretically, American patients have been able to see what doctors write about them for years. The Health Information Portability and Accountability Act, a 1996 law known as HIPAA, protects a patient’s right to see and get a copy of personal health records. In practice, though, formal records requests can take weeks to process and few patients take advantage of the option.
A growing movement is using technology to try to change that.
What started as an academic experiment has now become the norm at an increasing number of health care systems across the country: When doctors sign their notes, a copy is automatically visible to patients online.
According to OpenNotes, an organization based at Beth Israel Deaconess Medical Center in Boston that advocates for routine patient access to medical notes, more than 27 million Americans now can see what doctors and nurses write about them. (The OpenNotes project has received funding from the Robert Wood Johnson Foundation, which also provides financial support to NPR.)
Proponents of open notes say access gives patients more ownership of their medical records — and therefore their health.
“Now that we’re making it transparent about what goes into the [electronic medical record], it does raise some concerns,” says Dr. Bradley Crotty, an assistant professor at the Medical College of Wisconsin who studies open notes. “But it also lifts a veil.”
Crotty, a primary care doctor, says he routinely shares notes with his patients. He tries to complete his notes while his patients are still in the exam room so they can review them together and deal with any questions.
“We really want more engaged people to really take care of themselves at home, and to use all the tools at their disposal to take care of their health,” he says.
A 2017 study in the journal BMJ Quality and Safety found that a small but significant number of patients who had access to their records caught what they perceived to be errors.”The clinician has only two eyes on a couple thousand charts, and a patient has their two eyes only on theirs,” says Dr. Catherine DesRosches, an associate professor at Harvard Medical School and executive director of OpenNotes.
She has heard stories of a wide variety of errors that patients discovered themselves: a note written in the wrong twin’s chart, an error in the family history or an incorrect diagnosis. “They’re able to pick those things up,” she says.
But some doctors say that medical records — traditionally used to communicate with other health care professionals — may be confusing or frightening to patients.
And as time-strapped clinicians spend more and more time finishing paperwork after hours, many doctors worry that explaining their notes to patients will be one more task that will eat into their evenings and weekends.
Rachael Postman, a family nurse practitioner and assistant professor at Oregon Health and Science University, says the majority of her patients are grateful for shared notes.
But there have been a few cases that were difficult to navigate. One patient disagreed with Postman’s assessment that she was dependent on opioids. Another was upset when the gender label in the chart didn’t match a transgender patient’s identity.
Postman says she tries to resolve conflicts in person. “You get used to these things in primary care,” she says.
Despite these concerns, freer access to medical records has been well-received by doctors and their patients. A 2012 study of an OpenNotes pilot found that 99 percent of patients were in favor of the project continuing and that none of the participating doctors wanted to drop out.
According to OpenNotes, at least 120 health care systems throughout the country are now offering the service.
Dr. Robert Unitan, a clinical informaticist and pulmonary critical care doctor at Kaiser Permanente Northwest in Portland, Ore., says his organization started offering open notes in 2014 because it seemed like a competitive advantage.
“We had a lot of support from our patient advisory groups,” Unitan says. “They had been asking for this for quite a while. Their reaction was, ‘At last!’ ”
One change doctors will almost certainly have to make as their patients gain direct access to their notes? No longer using a common medical abbreviation for shortness of breath.
“Don’t use SOB in your notes,” Unitan says.
Mara Gordon is a family physician in Washington, D.C., and a health and media fellow at NPR and Georgetown University School of Medicine.