It's also practical. Kristina Violette, a former emergency room clerk in Lewiston, Maine, with severe scoliosis had been seeing the same doctor for 33 years until he recently retired. Because Violette's doctor always printed out his notes and shared them after every visit, she was able to hand them off to her new doctor for a smoother transition. With the notes, “I have a running tally of what's happened to me,” Violette said.
“It's really all about quality and patient satisfaction, and the most important thing is patient engagement,” said Dr. Patrick Cawley, executive director and CEO of Charleston, S.C.-based MUSC Health, which recently began piloting open access to notes with a small group of doctors. “You can do a lot to educate a patient, but unless they really want to work with you, meaning engage with you, it's hard to get that patient better.”
The Health Insurance Portability and Accountability Act gave patients the right to access their medical records, including doctor's notes, but getting hold of them is a hassle. With electronic health records, doctors can automatically share their notes with the push of a button.
EHRs aren't essential, as some physicians have been printing notes out and sharing them with patients for years. But the embrace of the cause by EHR vendors has made it easier and helped spread the movement to other hospitals in the country. Large vendors Epic and Cerner include a feature that allows physicians to share notes seamlessly without interrupting their workflow. Other vendors, like eClinical Works, plan to in the future. Turning the feature on doesn't cost a cent for hospitals.
But while the technical aspects of sharing notes is easy, “by far and away the bulk of the work was around convincing people and holding the provider's hand that the sky wasn't going to fall, and letting them know this is actually a good thing in terms of helping the patient understand what they had said in the clinic,” said Dr. Alistair Erskine, chief informatics officer with Danville, Pa.-based Geisinger Health System, one of the earliest systems to start sharing notes in 2010. Today, over 95% of its physicians have chosen to share their notes.
In most cases, when hospitals and practices decide to put doctor's notes on the patient portal, the physicians push back. They worry that easy access to their notes will lead to an avalanche of patient phone calls and questions. They fear the jargon and medical terms will confuse, alarm or even offend patients. Some are wary about malpractice lawsuits and cybersecurity breaches that could put sensitive patient information in the wrong hands.
The same fears were documented in a 2010 experiment that sparked the movement, known as OpenNotes. In that study, 105 primary care physicians from three health systems, including Beth Israel, Geisinger and Harborview Medical Center in Seattle, shared their notes with 20,000 patients. Once the yearlong study concluded, most of the physicians' fears weren't realized and none of them stopped sharing notes.
Dr. Elizabeth Gonzalez, an obstetrician at Sutter Medical Foundation, said she was apprehensive about sharing the notes at first, but it has led her to better document her patients' visits and spend more time delineating the care plan. Gonzalez has already seen huge impacts on her patients. After reading Gonzalez' note that characterized her as “morbidly obese,” one patient said the bluntness of the term prompted her to seek help from a nutritionist.
More than 50 providers, including prominent health systems like Stanford Medical Center, Mayo Clinic, Kaiser Permanente Northwest and the Department of Veterans Affairs, have now opened up access to their physician notes to nearly 12 million patients. Last December, the Robert Wood Johnson Foundation along with three other groups announced $10 million in funding to spread OpenNotes to 50 million patients nationwide. The funds will be used to market the movement and study its impact on physicians and patients.
While the 2010 experiment began with just primary care physicians, doctors of all specialties are now releasing their notes. The latest push seeks to involve mental health professionals. “They're scared of it,” said Tom Delbanco, professor of medicine at Harvard Medical School and co-founder of OpenNotes. “But why should I be thinking something about you that I don't share with you?”
The American College of Physicians' Medical Informatics Committee has recognized OpenNotes as a practice that could change clinical documentation for the better. But the group also said it's too early to push for broad implementation and called for further studies.
UCHealth in Denver is a few months away from looping its mental health professionals into sharing their notes automatically with patients. The hospital already releases inpatient and outpatient notes from about 3,000 physicians. Some departments, including obstetrics, opted out because they argued that their patients could be offended by terms they use in their notes, but most physicians now accept the new normal, said Dr. CT Lin, UCHealth's chief medical information officer.
“A significant fraction of our physician-patient conversations don't go that well. Patients come in with one agenda, doctors have a different agenda, and they don't always see eye to eye,” Lin said.
But patients at UCHealth have said that reading the doctor's notes reassures them that their doctor is listening and understands them, and that's “everything,” Lin said. “For a patient to make that statement, 'my doctor understands me,' has everything to do with their better downstream outcome of their medical treatment.”