May 27, 2015   School Closings
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When Patients Read What Their Doctors Write

The woman was sitting on a gurney in the emergency room, and I was facing her, typing. I had just written about her abdominal pain when she posed a question I'd never been asked before: "May I take a look at what you're writing?"

At the time, I was a fourth-year medical resident in Boston. In our ER, doctors routinely typed visit notes, placed orders and checked past records while we were in patients' rooms. To maintain at least some eye contact, we faced our patients, with the computer between us.

But there was no reason why we couldn't be on the same side of 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.


In 2010, Tom Delbanco, an internist, and Jan Walker, a nurse and researcher, started an experiment called OpenNotes that let patients read what their primary care providers write about them. They hypothesized that giving patients access to notes would allow them to become more engaged in their care.

Many doctors resisted the idea. Wouldn't open medical records inhibit what they wrote about sensitive issues, such as substance abuse? What if patients misunderstood the notes? Would that lead to more lawsuits? And what would patients do with all the information anyway?



The OpenNotes experiment has become something of a movement, spreading to hospitals, health systems and doctors' offices across the country. The Mayo Clinic, Geisinger Health System and Veterans Affairs are among the adopters so far. (The OpenNotes project has received funding from the Robert Wood Johnson Foundation, which also provides financial support to NPR.)

But there are new controversies arising. Should patients receiving mental health services obtain full access to therapy records, or should there be limits to open records? What happens if patients want to share their records on social media? Will such "crowdsourcing" harm the doctor-patient relationship? What if patients want to develop their own record and videotape their medical encounter? Are doctors obligated to comply?



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