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Tom Delbanco, MD, will never forget his “aha!” moment, even though it was nearly 50 years ago.
The patient sitting across from him had been referred to Delbanco for evaluation of hypertension. But Delbanco thought the man’s symptoms suggested he consumed more alcohol than he’d acknowledged.
Delbanco considered adding alcohol misuse to the patient’s “problems list,” but he stopped writing after realizing that the patient, a printer who set type by hand, was reading his notes upside down. Delbanco explained why he had stopped writing and informed the patient that he suspected he drank more than 2 beers a day. If that was the case, Delbanco added, it should be noted on his chart.
“I asked him what he thought I should do, because if he wasn’t drinking more than that, there was no point in my writing it down,” Delbanco recalled recently in an email. “He was silent for 20 seconds, and then quietly said, ‘Doc, you better write it down.’”
It was a seminal moment for both men.
For the patient, acknowledging his alcohol misuse led to a much-improved life, said Delbanco, a professor of general medicine and primary care at Harvard Medical School and Beth Israel Deaconess Medical Center. For the physician, the experience highlighted the value of transparent communication with patients, first proposed in the medical literature around the time Delbanco met the printer.
Over the years, he became increasingly interested in the benefits of sharing visit notes with patients, and in 2010, shortly before he began conducting research and teaching full time, he cofounded OpenNotes, a movement “dedicated to making open notes the new standard of care for all,” as stated on its website.
Everybody’s Doing It
On April 5, a new federal rule turned OpenNotes’ goal into the law of the land.
Now, virtually every US medical practice and health system must make all information in electronic health records—with a few exceptions—easily accessible to patients at no charge. The mandate, part of the 20th Century Cures Act enacted in 2016, originally was supposed to go into effect November 2, but the US Department of Health and Human Services (HHS) at the last minute extended the compliance deadline due to the COVID-19 pandemic.
The US Core Data for Interoperability lists 8 types of clinical information that must be shared: consultation, discharge summary, procedure, and progress notes; imaging, laboratory report, and pathology report narratives; and history and physical. The rule doesn’t apply to psychotherapy notes kept separate from the patient’s health record or notes compiled in reasonable anticipation of use in a civil or criminal court case or an administrative proceeding. In addition, the mandate permits withholding information if doing so “will substantially reduce the risk of harm” to a patient or another individual, such as in a domestic abuse situation.
“Two weeks before the original due date, we had 44 000 individual hits to our website, with at least 2100 hospitals among them,” Delbanco said. “So transparent communication is finally gaining attention.”
Even before the mandate went into effect, a number of US health care systems had already opened clinical notes to patients. By the end of 2020, 54 million patients—an increase of more than 10 million over 2019—in the US and Canada could already easily obtain that information, according to OpenNotes.
“The medical records belong to the patients,” internist Joann Elmore, MD, MPH, a professor of medicine at the David Geffen School of Medicine at UCLA, said in an interview. “They should have access to them, but they were not easy to find. That’s a barrier to patients.”
Skeptical physicians worry that having to share all health care information will increase their workload.
“There are definitely physicians who are not happy with this change,” Catherine DesRoches, DrPH, OpenNotes executive director, said in an interview. “But they’re not necessarily who you think they’re going to be.” When it comes to open notes, enthusiastic proponents and “over-my-dead-body” types may be colleagues in the same health care organization, DesRoches said.
More than two-thirds of clinicians—physicians as well as nurses, physician assistants, and therapists—who responded to a web-based survey supported offering patients ready access to notes, DesRoches, Delbanco, Elmore, and coauthors reported last year in JAMA Network Open. The report was one of several recent publications based on surveys of clinicians and patients at 3 large health systems—Beth Israel Deaconess Medical Center in Boston, University of Washington Medicine in Seattle, and Geisinger in rural Pennsylvania—that had shared notes across all outpatient specialties for at least 4 years.
The researchers invited 6064 clinicians to participate in the survey; 1628 (27%) responded, including 951 physicians. Of the physicians, 292 (37%) reported spending more time on documentation since they began sharing notes with patients.
DesRoches speculated about why younger physicians in the survey were more resistant to sharing notes than their older counterparts. “Younger physicians tend to work more hours,” she said. “They tend to see more patients, they tend to be a little higher on the burnout scale. I think the resistance among younger physicians is more related to ‘Please do not ask me to do one more thing.’” On the other hand, DesRoches said, older physicians “may feel more comfortable in their note writing and more comfortable with their patients.”
Although Marlene Millen, MD, is among the most ardent proponents of open notes at the University of California, San Diego (UCSD), she acknowledged that “I actually was totally against this 4 or 5 years ago.” Millen explained in an interview that she thought her notes weren’t written well enough to share with patients. But, the internist said, she eventually came to recognize that “the more information I share with my patients, the better they understand their medical situation and share in medical decisions.”
In 2018, UCSD physicians in primary care and 2 specialties began making notes more easily accessible to patients, Millen said. She tried to encourage other specialties to follow suit, but “I got a lot of pushback,” she said. “They were worried that it would take more time from their day, that patients would start sending messages.”
However, 84% of clinicians who responded to the OpenNotes survey reported that patients never or rarely contacted them with questions about their notes.
Greek to Patients?
Although many physicians who responded to the OpenNotes survey reported changing how they wrote their notes when they started sharing them with patients, valuable information could be lost if physicians try to “dumb down” their notes too much, Elmore cautioned.
“We should not alter the note in a way that makes it less helpful to us as clinicians,” she said. “It’s an added benefit if the note is also helpful to patients.”
For the most part, though, the changes haven’t been dramatic but more along the lines of using less medical jargon, DesRoches said. “The changes are around the margins, and they happen over time.”
In their survey of patients in the Boston, Seattle, and rural Pennsylvania health systems, DesRoches, Elmore, and their coauthors found that few were very confused by the notes. Of the 136 815 patients invited to participate in the survey, 28 782 responded. Among the respondents, 22 947 said they had read at least 1 clinical note and half said they had read at least 4 notes. Only 737 patients said the notes were very confusing.
Another recent publication based on the patient survey reported that 96% of the patients said they understood all or nearly all of a note they selected from a recent visit. Clinician type or specialty made little difference in whether they understood the note. In addition, 93% agreed or somewhat agreed that the note accurately described the visit, while 6% said something important was missing. Patients who said they had trouble understanding the note or found inaccuracies or omissions were much less likely to recommend the clinician to others.
But as a recent opinion piece pointed out, “Further research is needed to develop objective measures of documentation change and to explore how clinicians might optimize clinical notes to improve patients’ experiences and outcomes.”
In another recent article, DesRoches, Delbanco, Elmore, and their coauthors reported how patients who responded to their survey answered 2 questions: Had they ever felt judged after reading a note, or had they ever felt offended after reading one?
Of the 22 959 patients who responded to those questions 11% said they felt judged or offended or both. Those reactions were more common among women and people who reported poor health, unemployment, or inability to work. Among patients’ comments about why they felt judged or offended, the researchers identified 3 main themes: errors and surprises, labeling, and disrespect.
For example, some patients reported that notes documented physical examinations or discussions that they believed had not occurred, or they were surprised to see information they thought they had shared in confidence. Patients reported feeling negatively labeled when they saw words such as “obese,” “elderly,” or “anxious” used to describe them. And they felt disrespected if they thought their perspective was not valued, signaled by phrases such as “patient claims” or “patient denies.”
“We speak differently when we’re talking with a patient than when we write in a note,” coauthor Leonor Fernández, MD, an internist at Beth Israel Deaconess, said in an interview.
It is possible to keep sensitive details “off the record” while still including pertinent information in notes, she said. “We want to capture what is clinically important but not put in details that need not be known by the entire audience of the medical record.” For example, a patient might say that her husband was having an affair with their next-door neighbor, and Fernández said she might write, “Ms. S is very upset due to new developments in her relationship with her husband that have left her feeling betrayed and saddened.”
Patients cut physicians a lot of slack about perceived mistakes in notes if they feel they have a good relationship, Fernández said. Her advice to physicians is to write the note as if the patient were sitting beside them, collaborating.
OpenNotes is exploring how clinicians and patients actually can collaborate on clinical notes. With “OurNotes,” patients are asked to review notes from their previous visit and write and submit 300 words or less about how they’ve been doing since. They’re also asked to submit their 2 or 3 most important questions or goals for their upcoming visit.
Some physicians have expressed concern that sharing notes could create undue anxiety for the patient.
Research into the effects of open notes suggests that concern is unfounded, though, said S. Trent Rosenbloom, MD, MPH, an internist and pediatrician and professor of biomedical informatics at Vanderbilt University. Studies “find that providers are always more scared for their patients than patients actually are,” he said. And, Rosenbloom noted in an interview, patients can always choose not to look at their electronic health records if they think seeing the information in black and white might upset them.
Physicians shouldn’t write anything in the health record that the patient doesn’t already know, Millen added. For example, she said, she recently told a patient during a telemedicine visit that her test results showed she has diabetes. Only after she apprised the patient of the diagnosis did Millen note it in her health record.
“The concept of sharing notes in oncology is particularly nuanced,” Nadine McCleary, MD, MPH, a gastrointestinal cancer specialist at the Dana-Farber Cancer Institute, said in an interview. “Just the word ‘cancer’ really increases anxiety and stress.”
Dana-Farber and the Brigham and Women’s Hospital, which share an electronic health record, have allowed direct access to outpatient visit notes since January 2017. In a 2019 survey of 809 physicians at the hospitals, McCleary and her coauthors found that about 70% of both oncologists and nononcologists said that sharing notes would lead to less candid documentation. Oncologists were less likely than nononcologists to say that open notes would improve patient safety, offend patients, or increase risks for lawsuits.
McCleary and the other clinicians in her practice are used to engaging with their patients and their loved ones, but not through the note, which traditionally supported billing, communication with other clinicians, and tracking patients’ cancer journeys. “It was not ever supposed to be a communication tool with patients,” she said.
If a Tree Falls…
Providing easy accessibility to notes, no matter how well they’re written, doesn’t make much of a difference to patients if they can’t or don’t read them. In most health care institutions, the majority of patients aren’t even signed up to access the portal, DesRoches said.
Patients from traditionally underserved populations have been less likely to be offered access to their visit notes and, even when they are, less likely to read them, she said. “We know the digital divide issue is a serious problem,” DesRoches added. “There are places in the country that still don’t have good broadband access.”
A recently published study of Veterans Health Administration (VA) patients found that fewer than 1 in 5 users of MyHealtheVet, the VA’s patient portal, accessed clinical notes. The retrospective cohort study involved 882 575 unique portal users between July 2011 and January 2015. About 16% had accessed their clinicians’ notes. Compared with nonusers, notes users were younger, more likely to be White, and less likely to be financially vulnerable.
Millen said she always reminds patients at the end of a visit that they can read her notes, but most physicians don’t mention it. As a result, many patients don’t even know that notes are available for them to read.
More than two-thirds of Dana-Farber patients have signed up for the patient portal, which has seen an uptick in enrollment during the COVID-19 pandemic because telemedicine visits have increased, McCleary said. However, she added, certain patient populations haven’t connected with the portal as much as others. Reasons vary, she said, but they include privacy concerns and a first language other than English. “Our focus is on how to engage those patients who are not yet engaged.”
Although they might be less likely to access their notes, patients who identify as members of racial or ethnic minorities are more likely than other patients to report benefits from reading them, DesRoches said. They can share their notes with family members and caregivers, and the notes often contain links to websites with relevant, reliable information.
Under the new federal rule, patients must be able to access clinical notes via an app downloaded to their smartphone or other device by October 6, 2022, a requirement that is expected to expand the number of people who read them. Although they might not have Wi-Fi and a computer, explained Millen, whose institution already has such an app, “even most of my older or poorer patients seem to have a smartphone.”
Now that open notes is a done deal, the next step, researchers say, is to assess its impact on patients’ health. “What are the benefits of doing this?” McCleary asked. “Are we truly improving outcomes? Are we improving adherence to care? Those are the avenues we need to explore.”
Rubin R. How Sharing Clinical Notes Affects the Patient-Physician Relationship. JAMA. Published online April 07, 2021. doi:10.1001/jama.2021.4755
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