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The “Father of OpenNotes” Shares His Perspectives on the Movement’s Forward March

July 26, 2016
by Mark Hagland
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Dr. Delbanco shares his perspectives on where OpenNotes is now—and on where it’s headed

The OpenNotes movement, in which physicians and patient care organizations are sharing physician notes with patients following their doctor visits, is gaining steam all across the U.S. healthcare system. Already now, the OpenNotes team estimates, 10 million patients have access to their physicians’ notes online. OpenNotes—and its potential to change the physician-patient relationship, and ultimately contribute to the transformation of healthcare delivery in the U.S., to make it more responsive and to better engage patients in their care—was the subject of the July/August Healthcare Informatics cover story.

Naturally, every movement needs an early, visionary leader, and the OpenNotes movement has been no exception—it’s got Tom Delbanco, M.D. Delbanco is a professor of general medicine and primary care at Harvard Medical School, and practiced as an internal medicine physician for 40 years in the Division of General Medicine and Primary Care at Beth Israel Deaconess Medical Center in Boston. Several years ago, he joined together with Jan Walker, R.N. to initiate a movement that is now sweeping the country, changing healthcare, and creating numerous implications for healthcare IT leaders in its wake.

Dr. Delbanco was one of a number of physician leaders and others to interviewed for the July/August HCI cover story. He spoke this summer with Editor-in-Chief Mark Hagland. Below are excerpts from that interview.

To begin with, it is interesting that OpenNotes has a very light “footprint,” correct? You have very little heavy organizational structure or formality of any kind.

Yes, that’s correct. OpenNotes really is a movement; it’s not a piece of software or a hierarchical organization. The only thing that is ours is our logo, our name and our intellectual property on our website—our toolkits, our videos, our research—all of which we charge nothing for. We have no revenue stream other than philanthropy. And we have an agreement now with CHIME and AMDIS [the Ann Arbor, Mich.-based College of Healthcare Information Management executives, and the Association of Medical Directors of Information Systems].

So tell me about what made you decide to start OpenNotes.

I can see things over a long period of time. And there’s no question that when I went to medical school—and I had a good Jewish mother—that my mother thought I would be a god, and would tell people what to do. I don’t think the modern doctor thinks in quite those terms, though perhaps some do more so than people would admit. But here is the epiphany I had, as a general internist, who had started the division of primary care at Beth Israel [Medical Center].

It was in the 1970s, and I had a new patient whose complaint was high blood pressure. He was a young man, and I learned that his marriage wasn’t going well, that he was in some trouble at work—he was a printer by trade—and that he smoked. We had started to create problem lists in the medical record, which was still paper-based back then. And I was writing notes, but I said to myself, this guy is a printer, he can probably read upside-down what I’m writing about him right now. So I said to him, ‘Mr. A., you know, I’m stuck, because I think you can see what I’m writing, right?’ And he said ‘Yes.’ And I said, ‘So the problem is that your case is a classic one of early alcohol abuse, but I don’t want to write that down if it’s not true.’ And he paused, and then said, ‘Well, you’d better right it down.’

At around the same time, there was an article in The New England Journal of Medicine saying, why shouldn’t patients see their medical records? So I began giving patients copies of medical records I wrote. And then the electronic medical record came along, and Beth Israel was one of the first to have an EMR, and one of the first to have a patient web portal, now called PatientSite. And so we got used to the notion that patients could look at their problem lists and medication lists and message their doctors. But the one thing they couldn’t do was look at our notes.

And then in 1996, HIPAA [the Health Insurance Portability and Accountability Act] came along and gave patients the right to read anything in their record. But we as doctors made it as difficult as possible, charging 75 cents a page or requiring that a nurse be present, or stalling. So all we’ve really done with OpenNotes has been to give patients access to something that they have a right to do anyway. It’s about transparency; it’s part of the inexorable motion of transparency as it [transparency] takes over the world.

From what I’ve heard from physician and medical informaticist leaders, the main challenge in moving organizations, and practicing physicians, towards OpenNotes, is cultural, not technological, correct?