New study: Doctors should share notes with you

(CNN) -- After you leave your doctor's office, there's a crucial part of the appointment that happens behind your back: Your doctor writes a note describing how the visit went.

The note might say that your blood pressure is higher or better, or that you seem more or less stressed than previously. It may mention any prescriptions you're supposed to take and why, and when you'll be back for a follow-up.

A new study in the journal Annals of Internal Medicine recommends giving patients access to those notes.

"The note is sort of the narrative that holds everything else together," said Jan Walker, study co-author and nurse at Beth Israel Deaconess Medical Center in Boston. "That's where the story is."


The experiment took place at Beth Israel Deaconess Medical Center in Massachusetts, Geisinger Health System in Pennsylvania, and Harborview Medical Center in Washington. At these centers, 105 primary care physicians and a large number of patients -- more than 13,000 -- participated in this study. However, only a little over 5,000 of these patients opened at least one doctor's note and turned in a survey about the experience.

During a period of one year, participating patients received an electronic notification when they could view a doctor's note through a private online portal.


Researchers found that many patients who viewed notes were more compliant in taking their medications, and that doctors often noticed "some patients seemed more activated or empowered," the study found. Frequently, doctors said making notes available strengthened relationships with some of their patients.

In general, people tend to forget what happens during their doctors' appointments. Although they can request to see their files, often their official record will only be partial and will not contain notes. The notes can be a reminder and an insight into why certain medications were prescribed, said study co-author Dr. Tom Delbanco, also of Beth Israel Deaconess Medical Center.

When the experimental period ended, an impressive 99% of patients eligible to view notes said they wanted the program of "open notes" to continue, and no doctor said he or she was ceasing this practice.

About one-third of participants expressed concerns about privacy, however.


"Our goal is for this to become the standard of medical care," Delbanco said. "Patients are extraordinarily excited about it. Doctors were nervous about it, and their anxiety proved unfounded."

Taking doctors' notes out of their black box gives the decision about confidentiality back to the patient, Delbanco said. Doctors can't share their notes with anyone else except the patient, but the patient can choose to show parents, children, friends and even social media connections what their doctors recommended to them. Or, they can keep it private.


The study only looked at three geographical areas, so hospitals in other parts of the country may have different experiences. Also, only 41% of patient surveys were returned, so there may be a lot of participants who felt differently about the doctors' notes who did not respond.

Also, doctors volunteered to participate, meaning this was not a randomized design, and doctors may have had some bias about the practice of making notes accessible.

The participating doctors were primary care physicians, but the researchers believe the practice of opening up notes to patients can extend to specialists as well as nurses, physical therapists and social workers.

"We all work with patients and have information that they might find useful," Walker said.

Next steps

Walker and Delbanco are meeting October 11 with stakeholders in Washington to talk about how to move this forward. Providers, clinicians, the American Medical Association, the American Hospital Association, consumer groups and other interested parties will discuss how this intervention could be done on a broader scale.