Newswise, February 13, 2016 — Research led by UCLA professor
on ‘OpenNotes’ model finds that follow-up emails are critical to keeping
patients in the know
A study led by Dr. John Mafi, a professor at the David Geffen
School of Medicine at UCLA, has found that a simple note from a primary care
doctor can be a critical way to keep patients involved in their own health
care.
The research, published today in the peer-reviewed Journal
of the American Medical Informatics Association, examined a growing
national program that provides patients with easy online access to their
doctors’ notes about their appointments.
The 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 turned out to be quite a success: Patients demonstrated
better recall of their medical plans, felt more in control of their care and
were more likely to take their medications.
Doctors found that sharing their notes with patients had
little negative impact on their workflow. Five years later, more than 5 million
patients are participating in the OpenNotes movement.
And recently, four nonprofits contributed a total of $10
million to expand the program to 50 million patients.
But even as the program began to grow, two major questions
arose: Would patients continue to access the notes after the initial enthusiasm
died down?
And, how important were the doctors’ reminders in prompting
patients to remain active participants in their own care?
The study suggests that the reminders are indeed very
important.
Led by Mafi, an assistant professor of medicine in the
division of general internal medicine and health services research at the
Geffen School, the researchers found that patients tended to view clinic notes
substantially less once they stopped receiving the reminders, while patients
who continued receiving them tended to continue accessing the notes.
Mafi said patients immediately forget between 40 percent and
80 percent of what their doctors tell them — and they get about half of what
they do remember wrong.
“Poor patient–doctor communication represents one of the
biggest problems in our health care system,” said Mafi, who conducted the
research as a fellow in general internal medicine at Boston’s Beth Israel
Deaconess Medical Center and Harvard Medical School.
“OpenNotes offers patients a way to remember their doctors’
instructions, rationale for their care plan and any other critical information
about their health. OpenNotes has the potential to empower patients to take
charge of their health.”
Another recent study about OpenNotes found that patients who
read their notes are more likely to take the medicine they need to lower their
cholesterol.
The team led by Mafi studied 14,000 patients at Beth Israel
Deaconess and at Geisinger Health System in Danville, Pennsylvania, for two
years. Doctors at Beth Israel Deaconess sent reminders throughout the study;
those at Geisinger stopped after one year.
During the first 12 months, 53.7 percent of the patients at
Beth Israel Deaconess and 60.9 percent 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 percent of patients continued
viewing their notes once the email reminders ceased.
The study also found that compared to 55.1 percent of white
patients viewed their notes, compared with 36.3 percent of black patients;
these differences remained relatively consistent even after the researchers
accounted for differences in demographics, the patients’ illnesses and other
factors.
“While we predicted that reminders would influence patients’
viewing their doctors’ notes, we did not anticipate the large role that
reminders seem to play in patients continuing to access viewing their notes,”
Mafi said.
“The key lessons of our study are that sending reminders to
patients to view their medical notes may be essential to promoting patient
engagement and improving patient-doctor communication, and that new health
technology implementation requires additional efforts to reduce potential
disparities in health.”
Mafi said future studies should evaluate how to better engage
non-white patients in order to help mitigate racial and ethnic health
disparities.
Researchers should also evaluate the best way to invite
patients to view their doctors’ notes and then gauge the impact on patient
engagement, management of chronic diseases and health outcomes.
He also added that many patients already have access to their
notes but might not realize it.
“We encourage people to ask their doctors or other healthcare
professionals about whether they have access to their notes, and to make it a
habit to view them,” he said.
The study’s co-authors are Roanne Mejilla, Henry Feldman, Long
Ngo, Tom Delbanco, Christina Wee and Jan Walker of Beth Israel Deaconess
Medical Center, and Jonathan Darer of Geisinger Health System.
The work was supported by a
National Research Service Award training grant (T32HP12706) from the U.S.
Health Services and Research Administration and the Ryoichi Sasakawa Fellowship
Fund, the National Institutes of Health (K24DK087932); the Robert Wood Johnson
Foundation (65921), the Drane Family Fund and the Richard and Florence Koplow
Charitable Foundation
