As OpenNotes, an initiative that gives patients unprecedented electronic access to clinical notes, aims to grow from more than 5 million Americans currently to 50 million nationwide, clinicians have learned an important lesson—follow-up emails are critical for keeping patients engaged in their own healthcare.

That’s the finding of a two-year study of 14,000 patients—treated at Beth Israel Deaconess Medical Center (BIDMC) and Geisinger Health System—who were invited through an automated email to view their electronic notes detailing their clinic visits. Primary care physicians at BIDMC sent reminders throughout the study; those at Geisinger stopped after one year.

As a result, researchers found that patients tended to view clinic notes substantially less once they stopped receiving the email reminders, while patients who continued receiving them tended to continue accessing the notes.

John Mafi, MD
John Mafi, MD

“Because of an electronic health record glitch at Geisinger, the reminders stopped without warning,” says John Mafi, MD, currently a professor at UCLA’s David Geffen School of Medicine, who helped lead the study as a fellow at BIDMC in 2012. “The bottom line is that most patients—53.7 percent of the patients at Beth Israel Deaconess and 60.9 percent of the patients at Geisinger—read their notes in the first year within 30 days of availability. In the second year, patient viewing rates stayed the about the same at Beth Israel Deaconess. However, once reminders shut off at Geisinger, that number plummeted down to just 13.2 percent of patients who continued viewing their notes.”

Results of the study, published February 11 in the Journal of the American Medical Informatics Association, also found that white patients (55.1 percent) were more likely to view their notes, compared with African-American patients (36.3 percent). Mafi asserts that future studies should evaluate how to better engage non-white patients to help mitigate racial and ethnic health disparities.

According to Mafi, patients generally forget from 40 percent to 80 percent of what their physicians tell them during office visits, and about half of the information patients believe they “remember” from the doctor encounter is factually incorrect. “Obviously, we have a major communication problem in healthcare,” he contends. “It’s no surprise that out of the 3 billion or so prescriptions that doctors write every year in America, only 50 percent of them are ever filled.”

“Reminders are really critical if you want patients to continue to be engaged in their care.”

Improving patient engagement and physician-patient communication is at the heart of the OpenNotes initiative, which Mafi believes has important implications, particularly for managing chronic diseases.

“Reminders are really critical if you want patients to continue to be engaged in their care,” concludes Mafi. However, as $10 million in new funding from four foundations is used to expand research studying the benefits of sharing clinician notes with patients, he observes that the vast majority of healthcare organizations supporting OpenNotes are not using email reminders to boost patient viewing of their notes.

As these foundations attempt to grow the number of OpenNotes participants, Malfi argues that it is imperative that these patients get email reminders.

Last year, BIDMC received a grant from The Commonwealth Fund to develop OurNotes, an extension of OpenNotes in which patients and physicians would ostensibly be able to “co-create” visit notes and agree on their content. That $500,000 grant will support work at five sites: BIDMC, Geisinger, Harborview Medical Center, Group Health Cooperative and Mosaic Life Care. Mafi is co-leading that OurNotes study.

“Instead of having patients passively view their notes, we’re taking it to the next level by inviting patients to actually contribute directly to their notes,” he adds. “This is the future of healthcare, where the notes and medical records become more fluid and have patient ownership as well as include the patient voice.”

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