ARTICLE IN BRIEF
Neurologists who have adopted the OpenNotes program discuss the opportunities and challenges associated with sharing their medical notes and records with patients.
This 25-year-old obese woman with a history of depression, cocaine abuse, and pseudoseizures presents for neurologic consultation following an episode of whole body shaking...
It's the kind of medical note that you may write routinely, but would you invite your patient to read it? At first blush you may not think so, but OpenNotes, a pilot project that began as a 2010 study in which patients were given access to their primary care doctors' written notes, stunned many with its unanticipated success. Patients reported that they felt more in control of their care, were more educated, and adhered better to their medications. After 12 months, 99 percent of patients wanted to continue to have access to their notes online and none of the doctors decided to stop the practice.
Over the past five years, the movement has grown from the involvement of three programs registering about 20,000 patients — Beth Israel Deaconess Medical Center, Geisinger Health System, and Seattle's Harborview Medical Center — to enthusiastic adoption at institutions all across the country, with around five million patient records.
THE NEUROLOGY EXPERIENCE
Although the initial experience was focused on primary care, neurologists are also beginning to get involved as their institutions expand the program to involve more specialties. Neurology Today spoke to a few early adopters and asked them to share their experiences.
Jonathan P. Hosey, MD, FAAN, director of the Neurology Residency Program at Geisinger's Neurosciences Institute and chair of the AAN Practice Committee, has been using OpenNotes for almost a year. “There was clearly a lot of subjective concern about the decision before we began, but the excellent training, which included discussion of how to handle difficult situations, was extremely helpful,” he said. Dr. Hosey noted that since not all records need to be “open,” physicians maintained the option not to disclose, although very few have exercised that option.
Louis R. Caplan, MD, FAAN, a professor of neurology at Harvard, has been a strong advocate for transparency for years and has been using OpenNotes at Beth Israel for the past year and a half, along with 80 percent of the neurologists at Beth Israel. He noted that many doctors have not had good training in written or oral communication skills, but he anticipated that the program will push them to try to communicate better.
“I hope that the program will encourage doctors to make sure that their medical records are complete, accurate, thorough and easily understood,” he said. “We need to be transparent, and moreover, that's what patients expect.”
Eric M. Cheng, MD, FAAN, and Allan D. Wu, MD, who are both associate professors of neurology and physician informaticists at the University of California, Los Angeles (UCLA), are planning to roll out OpenNotes this spring. Although they intend to pilot it in a primary care clinic, they hope to implement it throughout the UCLA enterprise this year.
“The greatest barrier will be convincing physicians of its benefits,” said Dr. Cheng, who also serves on the AAN Practice Management and Technology (PM&T) Subcommittee of the Medical Economics and Management (MEM) Committee. But he noted that similar reservations were expressed prior to the automatic release of laboratory results to patients via the online portal; there was plenty of initial resistance, but the process is now well accepted.
“The literature and reports from institutions that use OpenNotes suggest that there may be some changes in the workflow, but it's usually a transition that occurs with relatively little fanfare in spite of these concerns,” Dr. Wu said. “As neurologists, we feel that we are the best advocates for our patients when we can educate them about the complexities of neurologic syndromes and diseases. OpenNotes offers another tool to help achieve this goal.”
The UCLA informatics team also spent time discussing when it would be appropriate to release the notes. For example, they felt that trainee notes should not be released until the attending physician reviewed them. They had to address a variety of workflow issues to ensure that a process was in place for doing that before starting the pilot.
“Another universal request was that physicians wanted to preserve the ability to suppress some notes from the patient portal,” Dr. Cheng said. “There needs to be clear institutional agreement on when that should be allowed and how it should be technically implemented so such suppression requests are appropriate.”
CHALLENGES AND OPPORTUNITIES
Not every neurology practice has decided to continue allowing full patient access to charts after trying it. David A. Evans, MBA, chair of the PM&T Subcommittee, who serves as CEO for Texas Neurology, a private practice of 18 providers including nine neurologists, underwent a two-week trial in 2012 in an effort to identify initial challenges from both the provider and patient perspective. The practice used a different program that was modeled after OpenNotes. Texas Neurology's electronic health record (EHR) system has a well-integrated portal with flexibility to provide full notes through eClinicalWorks, their vendor, or to limit access to material needed to meet meaningful use criteria.
There were few technical challenges, Evans said, but considerable effort had to be devoted to addressing concerns about the documentation of notes that would be available to patients. “Providers found they were spending more time with the patient during the exam to ensure nothing in the note would be a surprise,” Evans said. One patient demanded that his record be amended or he would file a complaint with the state board. “We ended up seeking guidance from our attorney, who advised us to mitigate the matter by adding the patient's statement as an addendum to the note,” he said. This event prompted the practice to end the program.
The UCLA neuro-informaticists do not anticipate that such incidents will be very common. “A key point to remember,” Dr. Cheng said, “is that patients have always had the right to get copies of their medical chart even prior to the EHR. OpenNotes certainly makes it much more convenient, but it doesn't expand what a patient could access beyond what was already possible.”
Moreover, he is hopeful that the quality of the notes will not be lost on patients. “Neurologists pride themselves on taking a good history and writing it in a clear way; if patients see that, they will appreciate the value we provide,” he said.
Dr. Wu, who has shared his notes with patients for years, said he was initially more careful and objective about how he reported his history, impressions, and treatment plan. But now he strives to keep the notes professional and aimed at his colleagues, not the patient. “I have not had many experiences — only one that I can recall — where my patient asked vocally to withdraw and modify my notes.”
Indeed, in Dr. Hosey's experience, there have been no substantive angry complaints, and less than 10 percent of patients have requested corrections to their notes. He added that specific training on appropriate documentation has mitigated that number. For example, instead of writing, “This patient who reports weakness in the right leg is probably faking it,” it's recommended that the patient be described as having “functional weakness in the right leg.” Instead of referring to someone as a “drug addict,” it is suggested that the terms “overuse,” “habituated,” or “tolerant” be considered.
Dr. Hosey has observed several positive consequences of the program. Attending physicians have become more vigilant about scrutinizing the notes of their residents, for example. And because some patients ask when the note will be ready, Dr. Hosey anticipates that there may be fewer delays in documentation and fewer delinquent charts. “The ultimate hope is that if patients look at their chart information, we will have better-educated patients,” he said.
Dr. Wu also pointed out another relatively large potential benefit: “Releasing OpenNotes to all neurology patients seems to save my office staff the work of sending notes to various providers and patients.” If notes are automatically released to patients, then the patient can be responsible for giving them to any future providers they may see, Dr. Wu explained.
If you're still skeptical about OpenNotes, consider the fact that this program is proceeding full speed ahead. Remember our hypothetical patient with pseudoseizures and depression? The Department of Veteran's Affairs and Beth Israel Deaconess have spearheaded projects that allow certain patients to view their mental health visit notes. Proponents of the plan hope that more transparency will reduce the stigma and isolation of psychiatric conditions, while also boosting patients' self-image. And the latest iteration of OpenNotes is experimenting with a collaboration with patients that enables them to annotate their charts through Google Docs. Researchers from Beth Israel Deaconess have obtained a $450,000 grant from The Commonwealth Fund and plan to create a new interface that allows patients to comment on their own medical records.
Dr. Avitzur, an associate editor of Neurology Today, chair of the AAN Medical Economics and Management Committee, and editor-in-chief of Neurology Now, is a neurologist in private practice in Tarrytown, NY, who holds academic appointments at Yale University School of Medicine and New York Medical College.
THREE MYTHS BUSTED BY OPENNOTES
OpenNotes busted several preconceived notions about what would happen when patients were able to read their medical records online.
1. Doctors would feel obliged to change the way they document sensitive matters.
Only about 20 percent of physicians reported changing the way they wrote about cancer, mental health, substance misuse, or obesity, according to a 2015 British Medical Journal (BMJ) analysis of the 12-month study, which took place at three sites: Beth Israel Deaconess Medical Center, Geisinger Health System, and Seattle's Harborview Medical Center.
2. Patients would be offended, confused, or worried by what they read.
Before the start of the voluntary program, eligible doctors and patients were surveyed about their attitudes and expectations toward electronic access to doctors' notes. In a 2011 Annals of Internal Medicine report, 50 to 58 percent of participating primary care providers (PCPs) and most non-participating PCPs (88 to 92 percent) expected that open visit notes would result in greater worry among patients, although far fewer patients (12 to 16 percent) concurred. But the actual results were even lower than that: The BMJ analysis concluded that few — only 1 to 8 percent of patients at the three sites — were confused, worried, or offended by what they read.
3. Doctors would be deluged with questions from patients.
According to the Annals of Internal Medicine pre-initiative survey, 36 to 50 percent of participating PCPs and 83 to 84 percent of non-participating PCPs were concerned about more patient questions between visits. But according to the 2015 BMJ study, only 3 percent of PCPs spent more time answering patient questions outside of visits, 11 percent spent more time writing or editing notes, and email volume did not change.
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