Sharing Notes with Patients Boosts Engagement

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."

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?

Then, a natural experiment presented itself: A glitch at the Geisinger Health System in Pennsylvania caused electronic invitations alerting patients to signed notes stopped at GHS after year one, Mafi says. They continued at Beth Israel Deaconess Medical Center in Boston.

Researchers followed about 14,000 OpenNotes trial participants for two years at Beth Israel Deaconess Medical Center and Geisinger Health System.

During the first 12 months, 53.7% of the patients at Beth Israel Deaconess and 60.9% of the patients at Geisinger checked their doctors' notes within 30 days of their becoming available to them. Those percentages stayed consistent throughout the year. During the second year, patients at Beth Israel Deaconess viewed their notes with the same frequency until a slight decline during the final three months.

At Geisinger, however, just 13.2% of patients continued viewing their notes once the email reminders ceased.

"Viewership just plummeted," Mafi said. "That was the big finding."

The data also showed that among the Beth Israel Deaconess patients, black and other/multiracial patients continued to view notes, but were overall less likely to view notes compared with whites.

There's a need to reach out those with disadvantaged backgrounds and/or lower health literacy. He points to an effort at a clinic in inner city Atlanta that's showing people with severe mental illness how to log onto the patient portal via their smartphones to get them more involved in their own care.

"It takes extra effort, but if you care about equity in health," the effort is important, Mafi says.

For healthcare executives, Mafi says the larger message is one of transparency.

"For us the message is clear: if you think patient engagement is important to your health system, then sharing the notes is a no-brainer," he says.

As with the first iteration of the OpenNotes study, studying the impact of reminders leads to other questions and research, too. For Mafi, the main question is: "How can we use medical notes and reminders that ping patients to really maximize the chance that the patient is going to be more engaged and lead to better health outcomes?… The next study really needs to do a whole array of different types of engagement techniques."

One way that researchers are doing that is with OurNotes, a new tool that's an extension of OpenNotes. Using a $450,000 grant from The Commonwealth Fund to develop OurNotes, patients at five sites—Beth Israel Deaconess; Geisinger Health System; Harborview Medical Center and Group Health Cooperative, both in Seattle; and Mosaic Life Care in St. Joseph, MO—will be invited to contribute to their own electronic medical records.

"We think that the next phase of all of this will actually have the patient become a coauthor of the note, and we think that will truly be a partnership… patients are more honest with the computer than with the doctor," Mafi says.

"We think this is the first effort in that next phase of really making the patient the center of the entire healthcare system, as opposed to an outside spectator."

"We think this is the way that healthcare is headed: The patient at the center of it all," he says.