Moving Forward with OpenNotes

Aug 14, 2013, 8:00 AM, Posted by Steve Downs

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As Beth Israel Deaconess Medical Center (BIDMC) begins its institutional rollout of OpenNotes, it's becoming clear that we've moved into a new phase of the diffusion of this innovation. I've been in discussions with OpenNotes co-directors Tom Delbanco, MD and Jan Walker, RN, MBA about the idea of opening up physician notes to patients since 2008, when it was a bold, controversial idea that needed to be tested. The landmark study that Tom, Jan and their colleagues conducted over 2011-2012 and published last fall made it quite clear that the idea had merit: overwhelming percentages of patients found it helped them better understand their conditions, feel in more control of their health and even take their medicines more regularly. 99 percent of patients in the study wanted to continue with the practice. As for physicians, their fears went largely unrealized. It simply wasn't a big deal.

Recently we've seen more leading institutions climb on board with the practice of sharing medical notes: the VA is adopting OpenNotes, as is Group Health Cooperative; Geisinger, one of the original study sites, is expanding the practice throughout much of its system; the Cleveland Clinic announced its intention to share visit notes; and you can now read your doctor's notes at the Mayo Clinic. More will undoubtedly follow in the months and years ahead. As we move into the implementation phase at these and other institutions, the questions will shift from whether the idea is good to more practical inquiries around how well it fits certain specialties (like psychiatry) or departments; whether there are patterns in the types of patients (or physicians) that flourish under this approach; and how to manage the cultural changes that OpenNotes implies.

We're committed to supporting this next, very crucial phase of the process and have backed that commitment with a $2.1 million grant to take OpenNotes to a new level. The grant will focus primarily on two very important tasks: 1) spreading the practice of sharing visit notes by helping organizations with the adoption decision and the implementation planning; and 2) learning from the various implementations that are now taking place and sharing those lessons with potential adopters. Optimally, we’d love to see 10 leading health systems and at least one regional group of provider organizations adopt OpenNotes or the practice of shared notes over the next two years. (And I hope that we're terribly underestimating the momentum that this idea now carries!)

As we were deliberating this new grant, my RWJF colleague Nancy Barrand asked an important question: once the practice of open notes is widespread, what will it enable? In other words, what new practice would now be possible? Or what could be built upon it? I didn't then and I don't now have the answer to that question, but I think it's the right question and I'd love to hear what people think.   

There's a glimpse of the changes that OpenNotes could bring about in a beautiful blog post by Peter Elias, a family physician who started sharing his notes with patients about a year ago. Elias' post hit home for me because it described a phenomenon we had speculated about in the early discussions of the open notes idea: that the act of writing a note with the knowledge that a patient would read it would force the physician, for just a moment, to stand in the patient’s shoes. To read his or her own words with the eyes of the patient.  Elias describes this very experience in very personal terms and while he doesn't use the word "empathy," it's there. You can feel it. He describes a journey that starts with empathy and then leads him to using the note as a tool for collaboration with his patients. It's a powerful story and, I hope, a wonderful harbinger of things to come.