ENGAGE speaker has been sharing her notes with patients since medical school

How do you test the power of information on real people in real time? Facebook did it without consent with its mood experiment. Doctors and patients participating in the Open Notes projects are doing it in a completely transparent way.

Dr. Leana Wen explains how she got started sharing her clinical notes with patients — well before Open Notes was a thing. She was a fourth-year medical resident working in an ER in Boston. The woman she was examining asked to see what Wen was writing. Wen moved to sit next to the patient so she could see the computer screen.

I sat down next to her and showed her what I was typing. She began pointing out changes. She’d said that her pain had started three weeks ago, not last week. Her chart mentioned alcohol abuse in the past; she admitted that she was under a lot of stress and had returned to heavy drinking a couple of months ago.

As we talked, her diagnosis — inflammation of the pancreas from alcohol use — became clear, and I wondered why I’d never shown patients their records before. In medical school, we learn that medical records exist so that doctors can communicate with other doctors. No one told us about the benefits they could bring when shared with patients.

That day in the Boston ER was a turning point for me. Since I started sharing notes with my patients, they have made dozens of valuable corrections and changes, such as adding medication allergies and telling me when a previous medical problem has been resolved. We come up with treatment plans together. And when patients leave, they receive a copy of my detailed instructions. The medical record becomes a collaborative tool for patients, not just a record of what we doctors do to patients.

Wen connects her personal experience with a nationwide project, Open Notes. It was started in 2010 by Tom Delbanco, an internist, and Jan Walker, a nurse and researcher.

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In her column on NPR, Wen responds to the potential downside to this open sharing. What about mental health records? What if the patient wants to videotape a visit?

Delbanco tells me that he considers Open Notes to be “like a new medication.” Just like any new treatment, it will come with unexpected side effects. In the meantime, patients and doctors don’t need to wait for the formal OpenNotes program to come to town. Patients can ask their doctors directly to look at their records. Doctors can try sharing them with patients, in real time, as I do now. It’s changed my practice, and fundamentally transformed my understanding of whom the medical record ultimately belongs to: the patient.

The stage 3 clinical trial for Open Notes was the initial Robert Wood Johnson Foundation project. This experiment involved a major urban hospital in Boston, an integrated health system in rural Pennsylvania, and a county hospital in Seattle and more than 100 primary care doctors and about 25,000 patients. That is enough of a test. Open Notes is officially on the market. Just as we discover the drawbacks to new drugs and devices as more and more people use them, we are finding out the downside to sharing doctors’ notes with patients. It’s not all bad, and any problems that may come up should not crater the entire effort.

If Wen’s approach to working with patients inspires you, you can hear her speak in person at ENGAGE, our patient engagement conference. She will be part of a panel discussion after the showing of “Code Black” on September 29. The movie follows a group of emergency room residents as they confront issues like maintaining patient dignity, designing an ER with patients in mind and battling an increasingly complicated healthcare bureaucracy. Buy your ticket today to get the best price.