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OpenNotes Now: How the Movement Will Change the Physician-Patient Relationship

July 18, 2016
by Mark Hagland
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Experts look at the forward drive of the OpenNotes movement, and the directions in which it’s headed

Every movement needs an early, visionary leader, and the OpenNotes movement has been no exception—it’s got Tom Delbanco, M.D. Delbanco, who practiced as an internal medicine physician for 40 years, several years ago joined together with Jan Walker, R.N. to initiate a movement that is now sweeping the country and changing healthcare—and creating numerous implications for healthcare IT leaders in its wake.

And, with more than 7 million patients who already have access to their doctors’ notes in their electronic health records (EHRs), it is worthwhile to go back and look at a moment several years ago that Delbanco cites as being a moment of epiphany for him, and that helped to ignite a movement that is changing how physicians and patients are interacting across the U.S., with major implications for healthcare IT leaders.

In fact, the anecdote that Delbanco shares is a strikingly personal one. He begins by saying that “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,” he says. “But here is the epiphany I had, as a general internist, who had started the division of primary care at Beth Israel” Medical Center (Delbanco remains a professor of general medicine and primary care at Harvard Medical School and affiliated with the Division of General Medicine and Primary Care at Beth Israel Deaconess Medical Center in Boston). “This 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.’”

That moment was a revelation, Delbanco says, looking back, as it crystallized his growing realization that his physician notes could be a source of collaboration and mutual understanding between himself and his patients, not simply a one-sided, walled-off process. That growing realization was later reinforced both when a New England Journal of Medicine article asked why patients should not see their physicians’ notes, and then the HIPAA (Health Insurance Portability and Accountability Act of 1996) made it a legal requirement to provide patients with their medical records, including physician notes, on request.

“So all we’ve really done with OpenNotes has been to give patients access to something that they have a right to do anyway,” Delbanco says of the OpenNotes movement, which in the last few years has quickly captured the attention of patient care leaders nationwide. “It’s about transparency; it’s part of the inexorable motion of transparency as it [transparency] takes over the world.”

Geisinger Health Makes Clear Early Moves

If anyone can testify to the power of the OpenNotes phenomenon, it is Alistair Erskine, M.D., the chief strategic information officer at the Danville, Pa.-based Geisinger Health System, and one of the first three patient care organizations to take the OpenNotes concept, as conceived by Tom Delbanco and Jan Walker, and implement it in their health systems (the other two being Harborview Medical Center in Seattle and Beth Israel Deaconess Medical Center in Boston). Erskine and his colleagues went live with OpenNotes in 2012. And, not surprisingly, he recalls that, “Before we went live, providers were more concerned than patients. Will it take longer? Will it require more messaging? Will doctors spend more time editing their notes, knowing the patient will read it? Will the doctor be more candid? How will the notes change around how we talk about cancer, or mental health, or obesity and weight loss? Will we be as efficient or more efficient? And will the notes improve patient education? Those were some of the questions we asked beforehand, and asked again after implementation,” he says. But once OpenNotes had gone live, all of those concerns evaporated virtually instantly, he reports.

Alistair Erskine, M.D.

“We’ve had virtually no complaints from either patients or providers,” Erskine notes. At the same time, Erskine believes that the way in which he and his colleagues brought the initiative live made a difference. “The thing that’s important about the way Geisinger approached it, differently from the other groups, is that we made it entirely voluntary,” he testifies. “We said, if you as a group, want to share notes, there’s a mechanism to do that, and they can enroll; but if you don’t want to, we will not force you, we will not mandate that you do it.”

As a result of the go-live four years ago, 600,000 patient encounters have been reviewed by patients, out of a total of 2 million outpatient encounters in the past four years. The average number of viewings per month is now about 50,000, Erskine reports; and more than 75 percent of physicians, physician assistants, residents, and fellows are involved in OpenNotes in the Geisinger organization, to date.