This article appears in the May issue of HealthLeaders magazine.
In a pilot, a system which permits patients to view all the notes in their electronic health records was such a hit with hospital patients and physicians that Beth Israel Deaconess Medical Center and Geisinger Health System are dramatically expanding their OpenNotes programs.
Possibly the most famous consumer of electronic health records is Dave deBronkart, better known as e-Patient Dave.
Several years ago, deBronkart participated in a trial of a new program that permitted patients to view all the notes in their EHR.
“I experienced a direct benefit,” deBronkart recalls. “Weeks after a visit, I thought, ‘Wasn’t I supposed to have something followed up?’ Heaven knows where my printed visit notes were … it was late in the evening, so ordinarily I’d have waited till morning and maybe remembered to call in and have someone look it up—very inefficient and vulnerable to ‘I forgot.’
“Instead, I went online right then and there, just as you might with anything else, from airline reservations to credit card info. There it was: actinic keratosis—a precancerous lesion. I had it removed, quickly, easily, inexpensively.” deBronkart says the diagnosis was “not academic” for him. “Thirty years earlier I had a skin cancer removed from my nose. And about a year later I was found to have a new one on my jaw.
“As a guy who worked in technology all his life,” deBronkart says, “it’s clear to me that what’s happening here is that value in healthcare depends on information plus awareness. In that moment I was aware of the information, which enabled action.”
Now deBronkart’s OpenNotes experience is being deployed at scale, and healthcare will never be the same.
The OpenNotes movement was tested for 12 months at three institutions: Beth Israel Deaconess Medical Center (649 licensed beds), Geisinger Health System (1,363 licensed beds), and the 413-bed Harborview Medical Center, a safety-net hospital that is part of the UW Medicine system in Seattle. Results from the study were published in the October 2012 Annals of Internal Medicine.
At the end of the tests, providers and patients liked OpenNotes so much that for those patients, access to those notes was restored after the trial. This year, Beth Israel and Geisinger are both dramatically expanding their OpenNotes programs.
A total of 105 primary care physicians from the three institutions volunteered to participate in the 2010 trial. About 20,000 patients overall were automatically given access to the clinical notes stored in their electronic medical records, says Jan Walker, RN, MBA, coprincipal investigator with Tom Delbanco, MD, of OpenNotes at BIDMC and Harvard Medical School.
When physicians would compose notes electronically, each institution’s EHRs would automatically trigger an email message to the patient, letting him or her know the note was ready.
“Two weeks before the next visit, we sent them another message saying ‘You have a visit coming up, and we suggest you might want to look at your last note, just to refresh your memory,’ ” Walker says.
Doctors who signed up were initially skeptical about the impact of OpenNotes on their workflow and the effect on their patients. “They were pretty worried that patients reading their notes would trigger an avalanche of questions—emails, telephone calls—that they just didn’t have the time to deal with,” Walker says. “And then they were also worried that patients would be worried or confused or upset by reading their notes.”
After the 12-month experiment, the results were positive: more than 80% of patients who had visited and thus generated a clinical note, had viewed at least one of the notes written during that time. “On the doctor side, they found that those worries about questions and patients being worried basically didn’t materialize,” Walker says. More than 70% of patients reported that they understood their medical conditions better. “They said they took better care of themselves, they better remembered their plan of care, they felt more in control, and about two-thirds of the patients taking medications said they were taking their medications better.”
At all three institutions, researchers asked patients if they wanted to continue to have access to their clinical notes, and 99% in all three places said they did, Walker says. “I’ve never done a survey before where 99% of people said anything.”
In the survey done at the end of the study, 20% of the participating physicians indicated they would not want to continue using the OpenNotes method, but when their commitment ended, not one followed through on those wishes. After reviewing the results of the study, the leadership at BIDMC, including all the clinical chiefs, voted unanimously to expand the OpenNotes program, Walker says. By the end of this summer, it will be rolled out to the 50,000 patients who are registered on BIDMC’s online, she says.
Geisinger’s big OpenNotes expansion, scheduled for April 2013, netted 585 doctors who volunteered to go live, up from the 25 doctors who participated in the trial. “We have some folks who’ve also embraced it very wholeheartedly, including some of our surgeons, which I’m thrilled about,” says Jonathan Darer, MD, chief innovation officer at Geisinger, a system which serves more than 2.6 million residents throughout 44 counties in central and northeastern Pennsylvania.
Leading up to this spring’s expansion, Darer gave 30–40 internal presentations to departments and small groups, listening to concerns. “There are a couple of themes that people express, and I can head those off with a presentation and try to help them understand how we’re going to manage some of the more sticky points,” Darer says. “For example, everybody’s got somebody in their clinic who’s, you know, complicated, emotionally—family issues, whatever it is. I say, ‘Don’t worry. We give the physicians the ability to exclude patients.’ ”
Indeed, Geisinger’s study didn’t find the unanimous good patient vibes found at BIDMC. Two to eight percent of patients “felt some kind of negative impact,” Darer says. “Some felt offended, some felt more worried. Giving the physicians the ability to exclude patients, just like they do with any medication or any medical treatment, based upon their good judgment, is appropriate.”
Nevertheless, at Geisinger, 87% of the patients who participated in the study read every single note generated by caregivers, Darer says. “Eighty-seven percent of patients doing anything is just remarkable, and all we did was send them a little note,” he says. Even more remarkable, 33% of the patients had a high school education or less. “Some of the language or terminology in a physician’s progress note can be pretty challenging for somebody to read, yet there’s incredible engagement with the material, people reading these notes, or at least opening them,” he says. The data also showed patients repeatedly reading their clinical notes, and 20% of them reported sharing their notes with someone else.
“Some of the explanation is that folks are used to figuring out how to get information about health, but not from their physician, so if they can’t understand something, instead of asking their doc, they ask their cousin the radiology tech, or their brother-in-law who’s a nurse, or whatever,” Darer says. “People are more savvy than we give them credit for.”
Darer says patients pointed out occasional errors left in the notes by physicians. “Doctors are not perfect,” he says. “We’re human. The patients would sometimes comment, ‘By the way doctor, it wasn’t my left knee, it was my right knee.’ And I never had a single physician feel like that was a bad call. They always felt like it added value. The chart was safer.”
For several kinds of patients, OpenNotes will be slow in coming. Darer describes four categories of exceptions.
“Psychiatry is certainly one of them,” he says. “There are three others that come to mind very quickly. One is there are concerns about child abuse. We’re going live in the pediatric arena, and that’s just very sensitive, and nobody’s comfortable at this point lighting those notes up. The other is the interesting, fascinating area of care of adolescents, where at a certain point, parents are asked to leave the room, because this growing young adult can then ask questions of the physician without having their parent there, and we don’t want the notion that the parent might be able to see the note to inhibit the kid from asking whatever it is they want, so we’re going to exclude patients between the ages of 12 and 17, so that there’s just no question that the parents would be able to see anything at that point.”
Finally, there is a concern about doctors administering therapy for pain. “It’s a less simple relationship with some of their patients due to the issues around potential drug-seeking behavior,” Darer says.
Can OpenNotes make patients healthier?
“That’s the million dollar question, isn’t it?” Walker says. “We didn’t try to do that in this study. And we will probably be looking at that going forward. …. But you know, when people say they understand things better, and they remember what to do, and they’re taking their medications better. I just can’t believe that people aren’t better off with this.”
Harborview Medical Center, the safety-net hospital, faces logistical and budgetary challenges before it can expand its use of OpenNotes, says Joann Elmore, MD, MPH, professor of medicine and adjunct professor of epidemiology at the University of Washington School of Medicine, whose dean and medical staff run Harborview for King County in Washington State.
The medical center’s patient population differs dramatically from the other OpenNotes test sites, and includes substantial numbers of patients who are part of separate groups, including homeless, incarcerated, nonEnglish-speaking, immigrant, and those with psychiatric problems and major trauma, Elmore says. Some had never used a personal computer before. Even if patients don’t own computers or are homeless, they are accessing computers at community libraries and at the hospital in its Patient Education Center.
In addition, since the 2010 trial concluded, Harborview replaced some of its older EHR systems with newer ones, and budget concerns have prevented integrating the OpenNotes tab into those newer records but Harborview is actively working on it, Elmore says. “I should say that Eileen Whalen, our executive director, is so impressed with this, as is the dean, and they want to see us move forward,” she notes.