When Glenda Thomas of Framingham, Mass., checked her doctors’ notes online after a recent infusion, she saw something that stuck in her mind. A nurse had written, “She denies recent illness.”
To Thomas, it was disconcerting. The notes seemed to imply that she didn’t recognize her own condition, a rare neuromuscular disorder. On the contrary, she understands it well.
When she called her provider for clarification, she learned that the nurse had only meant Thomas had no recent illness that would have prevented her from getting that day’s treatment. “Denies,” it turns out, is standard medical terminology that can sound strange to a layperson’s ear. “I mentioned to the nurse that it would have been clear to me if she had said, ‘She had no previous illness,’” Thomas said.
Clinicians’ notes like the one Thomas read are typically filled with medical jargon — which, for the most part, patients never saw. The notes have mainly been a tool for health care providers to track their work and communicate with each other.
Now, however, that’s changing. As of this past April, under a provision of the 21st Century Cures Act, health care providers are required to give all their patients electronic access to most kinds of medical notes. Patients previously had the right to ask for their medical records, and test results and some other documents have been available through electronic portals. But the fact that any patient can now log online and see clinicians’ notes represents a sea change — for patients and clinicians alike.
“We weren’t taught and trained that this was really the patient’s medical record, and that it’s the patient’s care, but really that’s what it is,” said Kyle Marshall, an emergency medicine physician at Geisinger Medical Center in Pennsylvania.
Some clinicians are hopeful that, knowing their notes are more visible, providers may begin to choose their words more carefully — perhaps resulting in more accurate medical records. They might also be more likely to avoid biased language that has the potential to affect a patient’s care.
As the words and phrases shift, the real human patient may emerge more clearly.
Although the change may seem abrupt, researchers have been studying the impact of “open notes” for years, including during a pilot program launched by three medical groups about a decade ago.
Sara Jackson, an internist at Seattle’s Harborview Medical Center, part of the pilot project, recalled clinicians feared their workloads would grow and they would start getting phone calls from irate patients. But none of those fears was realized, she said.
“Patients really liked being able to have that access, and it just didn’t increase work,” said Jackson, also an associate professor at the University of Washington School of Medicine.
Few doctors in the yearlong trial reported spending more time answering patients’ questions. Patients, though, said that they felt more in control of their own care, and had an easier time remembering to take their medications. None of the 105 doctors chose to stop sharing their notes when the study ended.
Before the new provision took effect in April, many health care systems across the country had voluntarily opened their notes. The rollout hasn’t been all rosy. Providers are still trying to find solutions to some issues, such as maintaining privacy for teens whose parents have access to their notes. Another challenge: Patients now see test results immediately, rather than waiting to hear results from their doctors. That unfiltered access “can be very distressing,”said Marshall, whose hospital was also part of the pilot program.
Research has also shown a gap in who’s reading: Patients accessing their notes electronically are likely to be younger, white, and financially secure. Health care organizations will have to make sure patients know about open notes — and have access — to achieve all the benefits, said Catherine DesRoches, executive director of OpenNotes, an initiative based at Beth Israel Deaconess Medical Center (BIDMC) and Harvard Medical School.
“Transparency doesn’t mean anything if no one is looking at it,” DesRoches said.
Chad Anguilm, vice president of the consulting company Medical Advantage, has been helping doctors transition to open notes. Sometimes technology can help unpack jargon, such as with dictation programs that automatically spell out the acronym a doctor uses. Anguilm said his team also creates macros that let providers quickly add a chunk of text to their notes, such as an explanation they often give.
“A lot of clinicians are very guarded at first about their documentation,” Anguilm said, but they find that after a few months of working with open notes, their writing becomes more accessible to lay readers. Anguilm said it can also be helpful to reorganize the information in a medical note, so that its order matches what happened in the visit.
It’s not clear that everyone is making their notes more readable yet. A study analyzing phrases in oncology notes suggested that about half of doctors made their writing simpler after an open notes rollout, while the other half actually made them more complex.
And old habits die hard. Take the word “denies” that tripped up Glenda Thomas.
Leonor Fernandez, an internist at BIDMC and assistant professor at Harvard Medical School, said the word is so ingrained in her that it’s challenging to stop using it. Doctors also commonly write that a patient “admits to” abdominal pain, for example, or refer to a patient’s “complaint,” as if every person coming in their door were a whiner.
“We mean zero by that,” Fernandez said, explaining that the phrases are just quirks of medical English.
In some cases, clinicians’ notes can seem offensive. “F/U” is used for followup, for example; “SOB” stands for shortness of breath. And sometimes, patients’ concerns about their notes go deeper, as with references to “obesity.”
“For some people it’s a really painful, painful word,” said Heather Gantzer, an internist in Minnesota and recent chair of the board of regents for the American College of Physicians.
She has started to use a numerical BMI instead, “not to hide things,” she said, “but to objectify them, so that the adjective you use doesn’t carry lots of non-medical baggage.”
Fernandez and others looked at that baggage in a survey that asked patients whether they’d ever felt offended or judged by something they read in a doctor’s note. About 1 in 10 said that they had. Some were bothered by finding details in their notes that they considered private, such as details about substance use or sexual issues.
These days, when in doubt, Fernandez asks patients if it’s OK to write something down. She might describe a sensitive issue in a categorical way, without many details.
“It’s not about lying; it’s not about not saying a problem exists. Because that would be bad, if we really start censoring in that way,” Fernandez said. In another recent study, though, about half of doctors reported being less candid after implementing open notes.
Fernandez recommends that doctors imagine how they’d describe an issue to a colleague if the patient were there in the room. She and her co-authors also suggest changes such as avoiding the term “non-compliant”; describing patients as having “alcohol use disorder” rather than being “alcoholic”; and saying that a patient “declines” an intervention rather than “refuses.” For a patient’s age, they recommend simply stating a number. (In one survey respondent’s words: “Provider called me ‘elderly’!!! Insolent pup!!!”)
Avoiding labels and sticking to objective, accurate information doesn’t just preserve patients’ feelings — it’s also better medicine, several doctors said. Clear reporting can help other providers, who may read a note later, figure out what’s going on with a patient’s health. “There are times where you can kind of get anchored on a specific diagnosis because it was written in a note by somebody else,” Marshall said.
As a support group leader and patient advocate, Thomas said any subjective comments from providers raise a flag for her. “If another doctor or someone else is reading it, and they are new to this patient, they will create in their own mind an impression of this person,” Thomas said. “And that’s not necessarily the correct impression.”
Surveys suggest that doctors are already adjusting their notes to be less critical and more supportive. Jackson said that in her notes she aims to “be a cheerleader for the behaviors that are really making a difference.”
A patient who feels encouraged by their notes might even experience health benefits. The authors of one recent paper argue that open notes have the potential to harness both the placebo effect and its evil twin, nocebo. In both cases, a person’s expectations can affect biological phenomena such as how much pain they feel. A patient who reads in their notes that a doctor has negative expectations about how well a treatment will work could, in theory, suffer more.
Using a fictional patient, researchers have also tried to measure how clinicians’ notes affect the care they provide.
In one study, a group of medical students and residents read about a 28-year-old named Mr. R. who came to the emergency room in terrible pain. He had overexerted himself pushing his wheelchair around the day before, and the drugs he usually took to manage pain from his sickle cell anemia weren’t helping.
Some of the comments in the patient’s record were less than neutral: The patient was described as “narcotic dependent,” and the notes said he “refuses” his oxygen mask.
The study authors assigned half of the group of medical students and residents to read this vignette. The other half read a more neutral version of Mr. R.’s notes: he was “not tolerating” the oxygen mask, for example.
Afterward, doctors who read the neutral notes felt more positively toward the fictional Mr. R., and chose more aggressive measures to manage his pain.
The lesson is that physicians have biases like anyone else, said Monica Peek, an internist and health disparities researcher at the University of Chicago and one of the study’s authors. With today’s electronic medical records, each provider’s notes are easier for future providers to see than they were in the past, Peek said. “If there’s bias that’s being inserted into that medical record, then it has a larger impact on that patient’s subsequent care.”
Doctors may not realize there’s bias in the words they choose, Peek said, adding: “Implicit biases are, by definition, subconscious.” Still, she thinks it’s possible that open notes could help reduce health inequities by making doctors avoid subtly harmful language in their notes.
“Whatever’s put there is going to follow you for life,” Thomas said. “I think it’s important that patients understand that now.” She appreciates being able to see what providers are writing about her and her illness so that she can advocate for herself. As doctors learn how to make their comments clearer, Thomas thinks open notes will help other patients become stronger advocates for themselves.
Fernandez, the internist at BIDMC, hopes that patients’ own voices will one day become part of their records, too. “It’s about the power of who gets to tell the story,” she said. In the meantime, she said that just remembering her patients might read her notes forces her to take an extra second to think about her words.
That second might make all the difference, she said. “I think it’s in those subtle, cumulative ways that it may be somewhat transformative.”