How racial bias is embedded in medical records

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David Confer, a bicyclist and an audio technician, told his doctor he “used to be Ph.D. level” during a 2019 appointment in Washington, D.C. Confer, then 50, was speaking figuratively: He was experiencing brain fog — a symptom of his liver problems. But did his doctor take him seriously? Now, after his death, Confer’s partner, Cate Cohen, doesn’t think so.

Confer, who was Black, had been diagnosed with non-Hodgkin lymphoma two years before. His prognosis was positive. But during chemotherapy, his symptoms — brain fog, vomiting, back pain — suggested trouble with his liver, and he was later diagnosed with cirrhosis. He died in 2020, unable to secure a transplant. Throughout, Cohen, now 45, felt her partner’s clinicians didn’t listen closely to him and had written him off.

That feeling crystallized once she read Confer’s records. The doctor described Confer’s fuzziness and then quoted his Ph.D. analogy. To Cohen, the language was dismissive, as if the doctor didn’t take Confer at his word. It reflected, she thought, a belief that he was likely to be noncompliant with his care — that he was a bad candidate for a liver transplant and would waste the donated organ.

For its part, MedStar Georgetown, where Confer received care, declined to comment on specific cases. But spokesperson Lisa Clough said the medical center considers a variety of factors for transplantation, including “compliance with medical therapy, health of both individuals, blood type, comorbidities, ability to care for themselves and be stable, and post-transplant social support system.” Not all potential recipients and donors meet those criteria, Clough said.

Doctors often send signals of their appraisals of patients’ personas. Researchers are increasingly finding that doctors can transmit prejudice under the guise of objective descriptions. Clinicians who later read those purportedly objective descriptions can be misled and deliver substandard care.

Discrimination in healthcare is “the secret, or silent, poison that taints interactions between providers and patients before, during, after the medical encounter,” said Dayna Bowen Matthew, dean of George Washington University’s law school and an expert in civil rights law and disparities in healthcare.

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Bias can be seen in the way doctors speak during rounds. Some patients, Matthew said, are described simply by their conditions. Others are characterized by terms that communicate more about their social status or character than their health and what’s needed to address their symptoms. For example, a patient could be described as an “80-year-old nice Black gentleman.” Doctors mention that patients look well-dressed or that someone is a laborer or homeless.

The stereotypes that can find their way into patients’ records sometimes help determine the level of care patients receive. Are they spoken to as equals? Will they get the best, or merely the cheapest, treatment? Bias is “pervasive” and “causally related to inferior health outcomes, period,” Matthew said.

Narrow or prejudiced thinking is simple to write down and easy to copy and paste over and over. Descriptions such as “difficult” and “disruptive” can become hard to escape. Once so labeled, patients can experience “downstream effects,” said Dr. Hardeep Singh, an expert in misdiagnosis who works at the Michael E. DeBakey Veterans Affairs Medical Center in Houston. He estimates misdiagnosis affects 12 million patients a year.

Conveying bias can be as simple as a pair of quotation marks. One team of researchers found that Black patients, in particular, were quoted in their records more frequently than other patients when physicians were characterizing their symptoms or health issues. The quotation mark patterns detected by researchers could be a sign of disrespect, used to communicate irony or sarcasm to future clinical readers. Among the types of phrases the researchers spotlighted were colloquial language or statements made in Black or ethnic slang.

“Black patients may be subject to systematic bias in physicians’ perceptions of their credibility,” the authors of the paper wrote.

That’s just one study in an incoming tide focused on the variations in the language that clinicians use to describe patients of different races and genders. In many ways, the research is just catching up to what patients and doctors knew already, that discrimination can be conveyed and furthered by partial accounts.

Confer’s MedStar records, Cohen thought, were pockmarked with partial accounts — notes that included only a fraction of the full picture of his life and circumstances.

Cohen pointed to a write-up of a psychosocial evaluation, used to assess a patient’s readiness for a transplant. The evaluation stated that Confer drank a 12-pack of beer and perhaps as much as a pint of whiskey daily. But Confer had quit drinking after starting chemotherapy and had been only a social drinker before, Cohen said. It was “wildly inaccurate,” Cohen said.

“No matter what he did, that initial inaccurate description of the volume he consumed seemed to follow through his records,” she said.

Physicians frequently see a harsh tone in referrals from other programs, said Dr. John Fung, a transplant doctor at the University of Chicago who advised Cohen but didn’t review Confer’s records. “They kind of blame the patient for things that happen, not really giving credit for circumstances,” he said. But, he continued, those circumstances are important — looking beyond them, without bias, and at the patient himself or herself can result in successful transplants.

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