Two recent studies indicated that when health care providers write comments into patients’ electronic health records, they are more likely to characterise Black patients adversely than white patients. The negative descriptions may contribute to bias and stigma, as well as impact the care that patients get.
“The chart makes the initial impression,” says Gracie Himmelstein, an internal medicine resident at UCLA David Geffen School of Medicine. “Even if you believe you’re simply searching for clinical facts, that story will impact your opinions of the patient.”
Himmelstein and colleagues looked at over 48,000 hospital admission notes from a Boston hospital. The study found in JAMA Network Open on January 27 that stigmatising language was more frequently used in the notes of Black patients compared to white patients, especially when it came to diabetes and drug use disorder.
Another research examined more than 40,000 medical records from a Chicago hospital. A different study group found in February Health Affairs that black patients were more likely to be classified as not cooperating with or resistive to treatment, among other unflattering phrases.
The two studies appear to be the first to measure racial bias in electronic health records in the United States. Bias can contribute to racial and ethnic health inequalities, which are variations in health caused by social, environmental, or economic disadvantages. For example, owing to health inequities, Black newborns had a greater death rate than white infants (SN: 8/25/20).
The researchers utilised a computer software to seek for terms with negative connotations, such as “not compliant,” “not adherent,” and “refused,” in medical notes written for over 18,500 patients from January 2019 to October 2020. In all, 8% of the patients’ electronic health records had one or more unfavourable phrases.
The researchers discovered that black patients were 2.5 times more likely than white patients to have such terms in their medical records. According to coauthor Michael Sun, a medical student at the University of Chicago’s Pritzker School of Medicine, this wording “has the potential for targeted injury.”
Himmelstein and colleagues combed through the electronic health record for phrases like “nonadherent” and “unwilling,” as well as stigmatising words like “abuse,” which label or blame the patient. The researchers looked at medical notes from January to December of 2018.
Approximately 1,200 admission notes, or 2.5 percent, contained disparaging wording. More of the terminology was weaved into notes regarding drug use disorder and diabetes, at 3.4 percent and 7 percent, respectively. In the overall sample, black patients were roughly 1.3 times more likely than white patients to have stigmatising phrases in their notes. When the researchers looked at diabetes notes, the factor was approximately the same, but when it came to drug use disorder data, Black patients were 1.7 times more likely to have unfavourable descriptors.
The new research did not look into the impact of the skewed notes on patients’ medical care. However, other research has indicated that when physicians read brief descriptions of patients that include stigmatising language, the negative phrases impact their treatment decisions, making doctors less likely to provide enough pain medicine.
Bias in medical records may sour patients’ perceptions of their physicians, in addition to potentially resulting in poor care. As a result of the 21st Century Cures Act, patients now have the right to examine their electronic health records. Primary care doctor and health equality consultant Leonor Fernández of Beth Israel Deaconess Medical Center in Boston believes notes with stigmatising or prejudiced portrayals might “possibly weaken confidence.”
Fernández and colleagues discovered that 10.5 percent of patients felt insulted, criticised, or both after reading their own notes, according to a survey of almost 23,000 patients published in the Journal of General Internal Medicine in September 2021. (Discrimination and racial prejudice were not directly addressed in the poll.) Many people also expressed what made them feel that way. “Note indicated I wasn’t doing everything I could to reduce weight, which was inaccurate and incredibly hurtful to have my Dr think of me like way,” one participant commented.
Researchers have written on how to de-stigmatize terms like drug use disorder and obesity, among other diseases. This recommendation recommends the use of language that does not define a patient only by their condition and instead emphasises the patient’s efforts.
Researchers from a diabetes care task committee urge that instead of designating a person as “diabetic,” health care practitioners write that the individual “has diabetes.” Instead than labelling a patient “non-compliant” with their medicine, the researchers recommend clarifying why, such as the patient taking insulin “50 percent of the time due to cost concerns.”
According to Himmelstein, a health care professional might “engage with that in a way that’s actually useful in promoting health” by identifying the hurdles to a patient’s capacity to follow medical recommendations. Sun believes that instead of using terminology like “non-compliant,” health care workers would “consider what other context and story” might be given about the patient.
According to Fernández, taking into account a patient’s issues “really makes you more productive” as a health care provider, and makes the patient less likely to feel blamed.
Sun and his colleagues in the Health Affairs research saw an unexpected and promising development in the electronic health record over time. In the second part of the trial, from March to October 2020, Black patients’ notes were no longer more likely than white patients’ notes to contain negative phrases. The beginnings of the COVID-19 outbreak and Black Lives Matter protests occurred around the same time.
Sun believes that further research is needed to figure out what’s causing the dip. In contrast to other diseases, he and his coauthors speculate that health care professionals may have viewed COVID-19 patients as less accountable for their sickness. But, as Sun points out, it might be related to how “significant” that time period was in terms of raising awareness of racial health inequalities. Perhaps the change was motivated by “empathy.”