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Let patients write in their medical notes and they will engage

Having patients contribute to their own medical notes could improve patient engagement and reduce physician burden—if it's done right, that is, according to new research.

As the OpenNotes movement gains traction, the next logical step is getting patients to participate in the notes too, said Jan Walker, a co-writer of the research report who's also a co-founder of OpenNotes, a movement that gives patients access to their doctors' notes.

"Patients report so many benefits from reading their open notes, but reading the clinician's note is essentially a passive activity," she added, explaining how a new take on OpenNotes called OurNotes—which allows patients to contribute to their charts—grew out of the original movement.

Testing published Monday in the Annals of Internal Medicine surveyed primary-care doctors, IT professionals, and other providers on the effectiveness of OurNotes. Overall, respondents were positive, said Dr. John Mafi, lead author of the study and an assistant professor of medicine at the David Geffen School of Medicine at UCLA. "They thought that OurNotes has the potential to boost patient engagement, to make care more patient-centered, and may even have some impact on improving efficiency," he said.

The notion also is that, over time, OurNotes and OpenNotes will lower cost by improving things like medication adherence, which improves outcomes.

But there are important caveats. For one, not all patients may want to write their own notes. For another, the practice may actually make providers' workflows more burdensome, as they get more documents to review. "If that happens, it's probably not feasible for this to work," Mafi said.

But Mafi is optimistic and said he thinks OurNotes will work. Testingers will test that hypothesis in a new pilot program in which primary-care providers at four healthcare organizations and chronically ill patients will test the system to figure out if it actually improves workflow and engages patients.

The researchers wanted to use patients with chronic conditions because of the way those conditions must be managed between visits to the doctor. "OurNotes is the first step in making care more continuous," Mafi said. "Perhaps it can get patients more engaged outside the visit, because that's where the rubber hits the road."

OurNotes is still nascent, but its forebear, OpenNotes, has gained steam over the last decade and a half. In 2010, a study published in the Annals of Internal Medicine found that OpenNotes was largely successful, with doctors facing similar workloads and most of the 20,000 patients in the study glad to have their notes shared with them. In 2013, the Veterans Affairs Department added OpenNotes to its Blue Button personal health record, and other health systems also have adopted it. Today, more than 19 million patients have access to their own notes.

Sometimes clinicians can add OpenNotes sharing to their electronic health record just by turning the function on in the patient portal. "It can be easier or harder depending on the EHR," Walker said. "It's more of a cultural change than a technical one."

OpenNotes is currently funded by the Commonwealth Fund, which also supported the OurNotes study.


Rachel Z. Arndt

Rachel Arndt joined Project Japan in 2017 as a general assignment reporter. Her work has appeared in Popular Mechanics, Quartz, Fast Company, and elsewhere. She has MFAs in nonfiction and poetry from the University of Iowa and a bachelor’s degree from Brown.


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