One effort, OpenNotes, is taking place in Boston at Beth Israel Deaconess Hospital, supported by the Robert Wood Johnson Foundation.
OpenNotes first launched with a year-long pilot in which 105 physicians in Boston, Pennsylvania and Seattle shared their clinical notes with more than 19,000 patients. The findings were encouraging: nearly all the patients were in favor of seeing their medical notes, and no doctors opted to stop sharing them once the study was over.
One of the program's founders, Dr. Tom Delbanco of Harvard Medical School and Beth Israel Deaconess, said physicians initially were concerned that opening their notes would impact workflows or "scare the hell out of patients."
But, there was very little impact on doctors, according to Delbanco, who says that this simple "medical intervention" is about empowerment, not drugs and devices.
"Patients feel more in control of their care and understand their health issues better when they are able to read the notes doctors write after their visits," says Jan Walker, another OpenNotes researcher at Beth Israel Deaconess Medical Center.
One patient, Candice Wolk of Weston, Mass., was ordered by her physician to see a dermatologist for a suspicious-looking mole, but forgot to follow-up. When she checked OpenNotes, it was like instant recall – and the mark turned out to be a premalignant condition. "As patients, we are our own best advocates, and even more so, when allowed access to visit records," Wolk says. OpenNote participants like Wolk, who were part of a large-scale experiment, also took medications more willingly – and doctors reported little disruption to their practice schedules or workload.
The results of the OpenNotes study, which included collaborators from three major medical systems, was so overwhelmingly positive that Beth Israel is adopting the innovation hospital wide.
Last year, the Department of Veterans Affairs also enabled more than one million former service members to download their medical information via the My HealtheVet Blue Button; Kaiser Permanente began making clinician notes available to its members across the Pacific Northwest earlier this year.
Delbanco and Walker are becoming a powerful national voice for this kind of transparency to become a standard of care. "The beauty of OpenNotes and other patient portals is that they are so simple, enhancing doctor and patient communication and becoming an aid for addressing health chronic problems down the road," Delbanco says.