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.
“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.
They key findings from participating in the study of the rollout and its aftermath, Erskine reports, are that all the key concerns that have come up at every patient care organization that has opened up physician visit notes—that patients would overwhelm physicians and their staffs with phone calls and messages; that physicians would have to totally redo the way they wrote their notes; that there would be malpractice suits—have turned out to be completely groundless. Instead, physicians reported very soon after Geisinger had gone live, that they had experienced almost no problems with the opening of their notes to patients, and very soon afterwards, note transparency simply became the new normal.
Specialist Leaders Testify to the Power of OpenNotes, Too
That certainly is what has happened at other patient care organizations as well. Among the patient care organizations that recently went to OpenNotes is Rush University Medical Center, an academic medical center in downtown Chicago. There, Allison Weathers, M.D., associate CMIO, has been leading the initiative. Weathers, a practicing neurologist, says that it is important for specialists to consider how valuable opening their notes to patients is for their practices, too, not just for those of primary care physicians. “This is one of the areas I’m really passionate about, the power that OpenNotes has to drive patient engagement,” she says. “Everyone has this vision of what old-school neurology is like, but it’s totally different now.” Based on some of the research that Delbanco and Jan Walker have produced, and that the folks at Geisinger, including Erskine, have participated in, Weathers and her colleagues, including CMIO Brian Patty, M.D., were able to bring strong evidence to their fellow practicing physicians at Rush to get them to agree to go ahead and open their notes.
Meanwhile, occasion presented itself last year, Weathers says. “We were planning for an upgrade of our Epic EHR [electronic health record] in February of this year, anyway. It was a massive double upgrade from the version of Epic we had been on, and Epic was going to look and feel different anyway. So I said, this is a great opportunity; I have to get up in front of everybody to explain changes anyway, so why don’t we do this? So we got buy-in from hospital leadership and from the medical directors. And the bottom line is that this is the patient’s legal right to this information. Patients could get off a call and call health information management and get their legal record, anyway.”
So Weathers and her colleagues in clinical informatics leadership at Rush set the default for ambulatory physician notes to open, beginning on Feb. 8, while allowing physicians to manually keep notes unshared. The exception remains the specialties of psychiatry and psychology, where the default remains closed. By late May, over 83,000 notes had been shared, but the number of patients who had actually viewed their notes remained under 200. Weathers emphasizes that she and her medical informaticist leaders chose to do what they called a “soft rollout,” meaning, with almost no publicity, in order to allow physicians to become used to it. As of late May when she was interviewed for this article, Weathers had reported that, having asked the heads of all the physician group practices for feedback, every single one had said that the opening of notes to patients had been a total non-issue.
Weathers’ sentiments are echoed by other specialists as well. Benjamin Zaniello, M.D., an infectious diseases specialist who practices at the AIDS Health Care Foundation in Seattle, and who also is involved part-time in doing care transformation work at the Seattle-based Providence Health System, agrees with Weathers. “I can understand the concern that specialists have around OpenNotes, because we often have two ‘customers,’ both the patient we’re seeing and the referring primary care physician,” Zaniello says. “So we need to provide the shorthand medical-speak that allows the referring physician to understand. And there’s absolutely some conflict there. But ultimately, I have two thoughts on why the OpenNotes movement is valid and as important for us specialists as for PCPs. Number one, the data in the note is about and around the patient, and the patient has the right to see it. And there should be no secrets. That is the most important thing. But the second thing,” he says,” is that the OpenNotes movement pushes doctors to take better notes about patient care. And in our fragmented marketplace, having better documentation will improve patient care.”
Mark Van Kooy, M.D., a principal at The Chartis Group, a Chicago-based consulting firm, agrees. “As physicians, we’re just beginning to really master electronic documentation, so it remains a challenge,” says Van Kooy. Actually, says the Philadelphia-based Van Kooy, “I think the shift towards OpenNotes does cause us to be a little more thoughtful about particularly sensitive language; and causes us to consider getting away from acronyms,” and overall, writing better notes.
Meanwhile, Rasu Shrestha, M.D., chief innovation officer at the UPMC integrated health system in Pittsburgh, says of UPMC’s experience so far with OpenNotes, “I’m a big believer as a physician in transparency—whether it’s pricing transparency, or transparency around processes and clinical procedures, and around documentation. I believe it improves the documentation itself, patient compliance and medication adherence—and that’s where things are going. I think it’s important to make sure that patients are part of the care collaborative. We talk about how maybe PCPs need to be the quarterbacks in team-based care, and that there has to be better collaboration and communication between and among the PCPs and the specialists and nurses—but how about the patients? This leads best to informed, shared decision-making; not just decision-making, but informed, shared decision-making; and this plays a major role in that.”
Could Patient Medical Literacy be an Inhibiting Factor?
Despite the gains in so many patient care organizations, there are skeptics. One who has certain reservations is A. Thomas McGill, M.D., CIO and vice president of quality and safety at Butler Health System in Butler, Pa. On the one hand, McGill says, “I would say as a long-term project, it will likely be valuable.” But, he adds, “There is going to be a lot of short-term cost. My note is not for the patient; it is for myself and other professionals. So the patients will not be able to comprehend it. What’s the corollary to OpenNotes?” he asks. “It’s the movement to improve medical literacy. Medical literacy is extremely low, and people don’t even understand how to take their meds. So that is a major challenge already,” he says, and says that medical literacy needs to be raised before large numbers of patients can benefit from OpenNotes.
Such concerns may keep some provider leaders from moving forward rapidly; but the leaders who started early on, as Geisinger did, are glad they did. One of those is Lori Posk, M.D., medical director of MyChart at the Cleveland Clinic Foundation, a division of the Cleveland Clinic. The Cleveland Clinic was one of the first major patient care organizations to implement OpenNotes, shortly after the Geisinger Health System, Harborview Medical Center, and Beth Israel Deaconess Medical Center. Cleveland Clinic went live in 2012, and OpenNotes has been very successful there, Posk emphasizes.
As at other organizations that have gone live with OpenNotes, opening physician notes really has been a non-issue for the doctors at Cleveland Clinic, she notes. What’s more, she says, “One of the major benefits I’ve heard from patients is that they have the opportunity to go home, read the note, and be able to understand in a very short period of time what the provider said,” while physicians have found the opening of their notes to be a non-issue there.
Spreading the OpenNotes Gospel Across Regions
Another physician leader who can confirm what Posk and others have testified to is Homer Chin, M.D., who is an affiliate faculty member at Oregon Health Science University in Portland, and who is the physician champion for the Northwest OpenNotes Consortium, and who before he retired was CMIO at Kaiser Permanente Northwest. Chin and his colleagues in the Portland metro area were inspired by the visit of Tom Delbanco and Jan Walker, who spoke to them in Portland in 2013. From that meeting came a meeting that September of representatives of 11 health systems in northwest Oregon and southwest Washington. Chin proceeded to help lead the initiative among that collaborative forward.
Chin, together with Erskine, and also John Santa, M.D., who until recently was director of the Consumer Reports Health Ratings Center, did a presentation in June at the annual Physician-Computer Connection Symposium, held in June in Ojai, California, on the subject of OpenNotes. Asked what CIOs, CMIOs, and other healthcare IT leaders should think about the OpenNotes movement, Chin quickly says, “Overall, that this is coming; this is becoming more standard, it’s no longer on the fringe. So the message is that the capability exists, and it’s becoming the standard of care. And there are advantages to organizations that implement this in terms of attracting patients. And there are potential patient safety benefits.”
The Future: “OurNotes”?
Inevitably, as the OpenNotes movement evolves forward, it is spawning new opportunities. “In fact,” Geisinger’s Erskine says, “OpenNotes 2.0 is being termed ‘OurNotes,’ in terms of its creating agenda-setting with the patient. Even before the patient comes to the clinic for a visit, they can log into their portal and do this on an iPad while in the waiting room, and can list for the doctor what they want to talk about during their visit. We’ve tried this in an open-ended way, for discussion between the doctor and patient during the visit. The physician then takes that information and uses it in the clinical note. And then when it’s all done, the patient gets a copy of that final note, for co-signature.” Though the initial pilot project has been small-scaled, Erskine believes that the “OurNotes” experiment points the way towards a new chapter in physician-patient relations going forward.
Clearly, there are many chapters left in this narrative. But there is no question that OpenNotes has already had a major impact on physician documentation—and the physician-patient relationship—in US. healthcare. And it will be fascinating to see what emerges from it in the years to come.