Doctors Are Slowly Opening Their Notes to Patients

Ever wondered what your doctor is saying about you in all of those typed or scribbled notes? You may be able to find out soon, if you can’t already.

OpenNotes is a national movement encouraging physicians to share medical records and the observations they record after patient visits. It was co-founded by Dr. Tom Delbanco, of Harvard Medical School and Beth Israel Deaconess Medical Center in Boston, and Jan Walker, a registered nurse and faculty member in the same department.

“Doctors have traditionally believed that the notes they make about their patients are just for them and patients have not been invited to read them,” says Delbanco. But that’s changing. Patients are beginning to demand access to all their records. They have a legal right to them.

Delbanco has been intrigued for years by the idea of doctors being fully transparent with patients. He believes transparency is the basic foundation for a good doctor-patient relationship. Now, with a shift in medical culture moving toward full patient participation in care and the ability of computers to make information sharing easier, OpenNotes is gaining traction across the country.

When the idea of OpenNotes was originally discussed at Beth Israel Deaconess, there was some apprehension. Dr. Leonor Fernandez, a primary care physician who participates in the program (as all physicians in the medical center are now required to do), says doctors initially worry that their workload will increase. They fear patients will be calling, asking for explanations and sending lots of emails to practitioners who are already pressed for time and overwhelmed with obligations.

Walker says their second biggest concern is that patients will be upset, offended or worried about what they read in the notes. Neither has turned out to be the case, she says.

The original 2010 pilot study, funded by The Robert Wood Johnson Foundation, included more than 100 primary care physicians from Beth Israel Deaconess, Geisinger Health System in Pennsylvania and Harborview Medical Center in Seattle. For 12 months, the doctors shared medical records with patients and researchers studied the findings.

“At the end of the study, 99 percent of patients wanted to continue with OpenNotes and no doctors elected to stop participating,” says Walker.

She says the feedback she has received from patients has proven that they love OpenNotes. They are reading and accessing the notes through computer portals; institutions with tracking capability show that patients open as many as two out of three notes. When emails are sent notifying patients that new notes are in their records, more are read.

“The notes remind patients about what took place during a doctor appointment, help them better understand what was said and agreed upon, and help remind them about any follow-up action that needs to be taken,” says Walker.

One of the biggest struggles in medicine, says Delbanco, is to get patients to adhere to whatever action needs to be taken for their health. He adds that OpenNotes are a way of involving patients more actively in their own care. Indeed, follow-up shows that those who participate refill their prescriptions in greater numbers.

Stacey Whiteman, a Beth Israel Deaconess patient with progressive multiple sclerosis, is a frequent user of OpenNotes. She says the notes help her keep track of her medical issues. Due to the exchange of information, Whiteman adds, her relationship with her doctor has improved and her medical education has benefited, too.

When she doesn’t understand a medical term, Whiteman simply looks it up on the computer she is already using. “I feel much more empowered with this system of reading notes,” she says.

Where OpenNotes is being used, families of patients can also benefit if a health care proxy has been signed. For someone who has elderly parents, for example, it can be a huge help to be able to read what has taken place during physician visits, the names and doses of medications and exactly what patients have discussed with doctors.

One daughter who helps care for her parents from a distance says that if OpenNotes were available in Florida where her parents live, her life would be less stressful. She says she could be actively involved through her own portal, wouldn’t have to worry that she was not getting the full story or that her parents had either forgotten or misunderstood what doctors had told them or weren't complying with physician recommendations.

After surveying members who were overwhelmingly positive about the initiative, Kaiser Permanente: Northwest Permanente was the largest health care system to embrace the adoption of OpenNotes on a massive scale in 2014 in Oregon and Washington for primary and specialty medicine. To date, over 1,000 of those clinicians are participating in the effort with more than a quarter of a million patients.

Robert Unitan, director of optimization and innovation at Northwest Permanente, says the positive feedback received from thousands of patients has been rewarding. “Sharing notes has largely been a non-event for clinicians, many of whom were initially very concerned about participating in OpenNotes,” he adds.

Throughout the country, more than 8 million patients at over 60 health care facilities are working with OpenNotes, Delbanco says. With $10 million in grants from the Robert Wood Johnson Foundation, the Gordon and Betty Moore Foundation, the Peterson Center on Healthcare and the Cambia Health Foundation, a push is being made to spread the movement with the hope that it will become standard practice.

“Fully transparent records are just the start,” says Delbanco. “In the future, we expect that patients, often families, and clinicians will share responsibility for their contents, that mutual trust will increase and that in the long run, the engagement that results will improve the quality and safety of care and hold down costs.”