Virtually all patients have the legal right to read a doctor's notes after an appointment, yet few do so. Advocates argue that if patients reviewed such notes, they would be better informed and more involved in their health care. But some doctors worry that the practice would disrupt their workflow and potentially scare patients.
Now, a five-year review of the benefits and risks of sharing notes suggests that the experience enhances patient safety and places little burden on physicians.
"There's a growing movement that patients want to be involved," says Sigall Bell, an assistant professor of medicine at Harvard Medical School and lead author on the new study, published in the August edition of The Joint Commission Journal on Quality and Patient Safety. "It could profoundly change health care delivery."
In 2010, two Harvard clinicians initiated OpenNotes, an effort to make doctors' notes easily available to patients. OpenNotes is not a single software or tool, but rather a "philosophy and commitment to transparency," Bell says. Many electronic health record portals are developing options for doctors to share notes with patients online, but the process can be as simple as copying or printing out a physician's remarks after an appointment.
A 2010 pilot study provided 20,000 patients with electronic links to their doctors' notes at three hospitals, including Beth Israel Deaconess Medical Center in Boston. During the study, patients accessed the notes frequently and said they appreciated the experience. And physicians continued to participate after the pilot study ended. The initiative has since expanded to over 5 million patients at dozens of locations.
The study identified numerous benefits of patient access to notes. Importantly, it helped patients remember what happened at appointments. According to past studies, individuals typically forget between 40 and 80 percent of information provided by a health care practitioner.
Patients also appreciated having access to a written track record of their health care over time. And reviewing the notes reminded patients to take actions they might otherwise have forgotten. One patient recalled, "Weeks after my visit, I thought: Wasn't I supposed to look into something? I went online immediately. Good thing! It was a precancerous skin lesion my doctor wanted removed."
There was a final, noteworthy benefit to reviewing shared notes — patients noticed errors. Doctors agreed that one of the "best things" resulting from sharing notes was an extra set of eyes on the chart. One participating doctor commented, "I felt like my care was safer, as I knew the patients would be able to update me if I didn't get it right."
There were still some concerns; doctors worried about whether errors in the records would make patients doubt them or provoke conflicts.
The OpenNotes team is now performing a two-year study of the effects of the program on patient safety and medical errors, and is developing an online reporting tool so patients can provide feedback on their notes.