The Case for Open Notes Access

Published in Dome - November 2016

Although some physicians initially balk at the idea, sharing exam notes with patients is a growing trend endorsed by the American College of Physicians. More than 8 million patients in the United States already have access to their clinicians’ notes, as do many Johns Hopkins patients who use the OpenNotes option in the Epic electronic medical record system.

Studies demonstrate that reading clinicians’ notes helps patients and their caregivers remember important information from the office visit, improves health literacy and increases patients’ engagement in their own care. Engaged patients are more motivated to follow their care plan and have higher rates of medication adherence.

Open access to exam notes also allows patients the opportunity to address physicians’ mistakes, says Howard Levy, an internist who is co-chair of the Patient- and Family-Centered Design Team and the lead physician champion of using OpenNotes at Johns Hopkins Medicine. “A patient of mine noticed that I’d written in my note that one of her medications was discontinued, but it was something she needed to take,” he says. “Transparent notes help patients take a more proactive role in their care.”

Levy says roughly 150 Johns Hopkins Medicine providers offer their patients OpenNotes, including the Department of Neurosurgery, Green Spring Station General Internal Medicine, Johns Hopkins Outpatient Center Audiology and the Comprehensive Care Practice at Johns Hopkins Bayview Medical Center. (Patients should ask their providers if they offer this option.)

What the Data Show

In a 2010 demonstration study, 105 physicians from Beth Israel Deaconess Medical Center, Geisinger Health System and Harborview Medical Center in Seattle offered some 19,000 patients access to their exam notes. More than 80 percent of patients opted to read their notes and, after a year, virtually all wished to continue to do so. More than 85 percent said that the availability of OpenNotes would influence whom they would choose as providers.

Any Downsides?

Some physicians question whether transparency is the best policy when exam notes involve medical terms like “morbidly obese,” which have negative connotations to the layperson. And they worry that certain patients’ conditions might make it difficult for them to keep perspective when reading notes on their psychiatric diagnoses.

While Levy points out that patients already have access to their diagnoses in Epic’s MyChart, the online portal that lets patients view their medical records, he says the system allows providers to uncheck a box if they do not want to share a specific diagnosis. The same applies to exam notes. “If the clinician judges that sharing would cause more harm than good, then it is appropriate to withhold certain notes,” he says.

Already overburdened physicians fear that making their notes accessible to patients will add to their workload. In the demonstration study, however, only 3 percent of physicians reported spending more time outside of visits answering patients’ questions, and their email volume remained the same.

About 20 percent said that the way they wrote about cancer, behavioral health, substance abuse or obesity changed, and 11 percent reported taking more time writing and editing their notes. However, at the end of the study period, all the participating physicians opted to continue making their notes accessible to patients.

In his own practice, Levy finds that sharing notes makes him more open with patients and facilitates sensitive conversations with them. “I’ll say to a patient: ‘Your BMI is over 40. The medical term for this is morbidly obese.’ And I’ll ask the patient how he feels about it. No patient likes it, but none has said, ‘That’s wrong; take it out.’ I find this to be a less loaded way to say, ‘You have a weight problem. What are we going to do about it?’

“Most of us are in health care to help our patients be healthier and take better care of themselves. OpenNotes provides them with insight into our thinking and written reminders about what we want them to do, making them likelier to follow our medical advice.”