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Sharing Notes with Patients Boosts Engagement

By Alexandra Wilson Pecci  
   February 19, 2016

A two-year OpenNotes trial led researchers to a conclusion about transparency: "If you think patient engagement is important to your health system," then sharing the providers' notes "is a no-brainer."

Between 40% and 80% of what a healthcare provider tells patients is immediately forgotten, and half of what they do remember, they get wrong.

"Those are two of the most depressing statistics I've ever heard," says John Mafi, MD, a professor at the David Geffen School of Medicine at UCLA. "We have a big communication problem in our healthcare system, and that's an understatement."


John Mafi, MD

The result of all this miscommunication and forgetfulness, Mafi says, are the very things that are plaguing the healthcare system as a whole: Low patient engagement, poorly managed chronic conditions, prescriptions that go unfilled, medications that lay forgotten in medicine cabinets, bad outcomes, and high costs.

"A lot of these issues stem from poor patient communication," he says. But a new study shows that sharing doctor visit notes with patients—and reminding patients that those notes are available to them—can help keep patients engaged.

Mafi is lead author of a study in the Journal of the American Medical Informatics Association that examined the effect of email reminders on whether patients accessed their doctor's notes in the OpenNotes program.

OpenNotes, began in 2010, when 105 primary care physicians invited nearly 14,000 of their patients to view their electronic notes about their clinic visits. The initiative was intended to better engage patients in their own care and improve communication between patients and their doctors. It was a success. After the program, patients demonstrated better recall of their medical plans, felt more in control of their care, and were more likely to take their medications.

"Patients felt more in control of their own healthcare. They felt that they understood the language of care much better," Mafi says.

In addition, doctors found that sharing their notes with patients had little negative impact on their workflow. But Mafi said that the program was "totally anticlimactic" with regards to physicians' workflow, and their email volume didn't change.

"The doctors were so worried that this would really interrupt their workflow," Mafi said. "When doctors were offered to opt out, none of them did."

In 2014, a group of nine health systems representing one million patients in the Pacific Northwest announced that it would provide open access to physicians' notes in electronic medical records. Today, more than 5 million patients are participating in OpenNotes, and recently, four nonprofits contributed a total of $10 million to expand the program to 50 million patients.

The success of the program led to other questions, though.

"Who is actually reading these notes in terms of their characteristics?" Mafi says. Also, the program was successful during first year, but are patients really still reading their notes after a couple of years? Finally, how helpful are reminders for patients?


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Alexandra Wilson Pecci is an editor for HealthLeaders.

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