The Invisible Effect Medical Notes Have on Care

In the mid-1990s, when Somnath Saha was a medical resident at the University of California, San Francisco School of Medicine, he came across a cluster of studies showing that Black people with cardiovascular disease were treated less aggressively compared to White people. The findings were “appalling” to the young physician who describes himself as a “Brown kid from suburban St. Louis, Missouri.” (...)

While numerous studies have found evidence of racial discrimination in medicine through patient reports, less is known about how implicit bias shows up in medical records, and how stigmatizing language in patient notes can affect the care that Black patients receive.

That’s part of the reason why, about seven years ago, Saha began poring through medical records. For him, they offered a window into doctors’ feelings about their patients.

As part of his latest research, Saha’s team examined the records of nearly 19,000 patients, paying particular attention to negative descriptions that may influence a clinician’s decision-making. The data, which was recently presented at the 2023 American Association for the Advancement of Science annual meeting, isn’t yet published, but it suggests what researchers have long speculated: Doctors are more likely to use negative language when describing a Black patient than they are a White patient. The notes provide, at times, a surprisingly candid view of how patients are perceived by doctors, and how their race may affect treatment.

The study adds to a concerning body of literature that explores how racial bias manifests in health care. Researchers like Saha are interested in how such prejudice leaves a paper trail, which can then reinforce negative stereotypes. Because medical notes get passed between physicians, Saha’s research suggests they can affect the health of Black patients down the line.

“The medical record is like a rap sheet, it stays with you,” Saha said, adding that “these things that we say about patients get eternalized.” (...)

But in his first year of medical school, his professor shared the story of a longtime patient, whom she had referred to an outside specialist. In Sun’s recollection, the professor regarded her patient in kind terms, having worked with her for some time to treat a chronic illness. But when she got the specialist’s notes back, she was confused by the description of her patient: Terms like “really difficult,” “non-compliant,” and “uninterested in their health.” This was not the patient she remembered.

“This, as a first-year medical student, really shocked me because I had taken at face value that any words used in notes were true, were valid, or rightfully used,” said Sun. “I realized all the ways that bias, untold stories, and unknown context may change the way that we view our patients.” (...)

Saha pointed to three categories of stigmatizing language that were the most pronounced: expressing doubt or disbelief in what the patient said, such as reporting they “claimed” to experience pain; insinuating that the patient was confrontational, using words like “belligerent” or combative”; and suggesting a patient was not cooperating with a doctor’s orders by saying they “refused” medical advice.

“We’ve known for some time that in health care we sometimes use language that can be confusing or even insulting,” Matthew Wynia, director of the Center for Bioethics and Humanities at the University of Colorado, wrote in an email to Undark. But he noted that research such as Saha’s has drawn attention to a previously overlooked issue. Describing a patient as “non-compliant” with medications, he said, “makes it sound like the patient is intentionally refusing to follow advice when, in fact, there are many reasons why people might not be able to follow our advice and intentional refusal isn’t even a very common one.”

Saha noted that if a patient isn’t taking their medication, it’s important that doctors note that, so that the next physician doesn’t overprescribe them. But the concern, he said, is whether doctors are using these terms appropriately and for the right reasons because of the implications they have on patients.

If a doctor portrays their patient negatively, Saha said, it can “trigger the next clinician to read them and formulate a potentially negative opinion about that patient” before they’ve even had a chance to interact.

Still, stigmatizing language is only one small piece of the puzzle. What also matters, Saha said, is how those words can have an impact on care. In prior work, Saha has shown how implicit and, in some cases, explicit bias, affects a patient’s treatment recommendations.

by Sara Novak, Undark |  Read more:

Image: Jose Luis Pelaez/The Image Bank via Getty Images
[ed. Glad to see this issue getting some attention, albeit with an unfortunate racial angle. Medical records are like school records, biased by the physician/teacher recording them, and passed on through sucessive interactions within the healthcare/education system. How many people request a copy of their medical records? You might be appalled at what you find.]