Sharing doctors’ Open Notes with patients

Jan Walker and her colleagues just published an article about patients' and doctors' attitudes toward sharing doctors' appointment progress notes with patients. In an interview, she described some of the most interesting findings:

We ran the Open Notes experiment at three sites, in urban/suburban Boston, rural Pennsylvania, and inner-city Seattle over 12 months, through this summer. The published article discusses the results of surveys, before the experiment began, of both the doctors and patients about the idea of open notes. According to these findings, patient expect that reading notes will help them understand their health and conditions better. The team also surveyed patients and doctors after the 12 month period, to find out what actually happened, and hopes to publish those findings in spring/summer 2012.

So, results are pending, but the researchers have heard some stories along the way of impacts of sharing notes, and are sometimes catching things. Early on, there was a doctor who called to mention his first experience with Open Notes, saying that at an appointment with a patient, he’d mentioned a test, but had forgotten to order it. The patient read Open Notes and told the doctor the test hadn’t been ordered, and asked that it be ordered. As another example, we had a patient who went home after her appointment and thought, I remember the doctor said three things, but I forgot one of them. So she read the note, in which the doctor advised that she should check out a spot on her skin. So she had a Dermatology appointment, which was a good thing, as it turned out that the spot DID need medical attention.

So things that were missed may be picked up earlier. One doctor, who’d been dragged somewhat reluctantly into this project, said, “a few months in, I felt safer because there are more eyes”; medical care is so complicated, that the extra set of eyes really helps. We had approval to run the experiment for 12 months. At the end of the study, we notified the doctors that the official study period was ended and that they could certainly drop out and we would turn it off. Not one doctor asked to have Open Notes turned off.

This could create more trust between doctors and patients, by opening the black box, and making all this less mysterious than patients may have thought. Some patients, we learned to our surprise in the focus groups, don’t realize that doctors write notes about the visit. Patients don’t all know they have a legal right to their medical records, in the Federal HIPAA law.

We thought that the younger, more tech savvy, better educated patients would be very interested in the doctor’s notes, but not necessarily older, less savvy or educated patients. But across the board, everybody is interested. That really surprised us.

Jan’s advice: Even if your doctor doesn’t use an electronic medical record, ask to get a copy of the doctor’s note about your visit.

The article appeared in the Dec. 20 issue of Annals of Internal Medicine. Thanks to Jemma Weymouth and Morgan Warners of Burness Communications for connecting me with Jan.

Read another article on a provider that gives even their woofing patients access to their progress notes.

I can’t hear you while I’m listening: Communicating with your doctor

A stethoscope amplifies inaudible heart and lung sounds in a very satisfying way. If, however, the owner of the organs under evaluation decides to make a comment during the exam, what results is a painfully loud, unintelligible blast of noise directly into the doctor's head.

It was during such an interruption almost 30 years ago that Dr. Richard Baron, a Phiadelphia internist, grumbled at his patient: "Shhh. I can't hear you while I'm listening." The phrase has undoubtedly been said by many, but Dr. Baron was the one with the wit to stop and laugh (and reflect at length in a classic medical article), realizing that he had enunciated in pure koan form probably the single greatest tension in modern medical practice.

Against the siren song of all those beautiful instruments and machines, whatever the patient has to say is sometimes just an annoying interruption.

This is a caution about the use of technology. It's also a caution to patient advocates, to ensure we don't get in the way of the doctor's listening to the patient.

Advice: Find a doctor who listens to you – and do your part by enabling him or her to listen fully, in every sense of the word.

Read another physician listening story. Thanks to Dr. Abigail Zuger for the source story in the New York Times on Oct. 27.

Get an Ix with your Rx: Patient education by physicians

Joshua Seidman’s Advice: Research shows that 40%-80% of everything a doctor tells a patient in the office is forgotten, so taking along a patient advocate is a great strategy. Unfortunately, it is not always an option or sufficient. In order to ensure effective communication, every patient should leave the doctor's office with an information prescription (Ix). This after-visit summary reinforces what transpired in the clinic and outlines the person's next steps for self-management and interaction with the delivery system.

Providers that have implemented after-visit summaries — both in print form and available through a secure Web portal — have found that patients love them. The summaries provide something tangible to take home, guidance that is practical, and a bridge to the next visit or to a referral to another clinician.

Non-profit and government organizations such as the Center for Information Therapy, American College of Physicians and National Library of Medicine have been advocating information prescriptions for years.

Next time you go to the doctor, make sure to get an Ix with your Rx.

Read a story about model provider-patient communication, or read more atJoshua’s web site.