Lack of clarity in ACR, EULAR guidelines show 'urgent need' for standardized race reporting
A study of 65 clinical practice guidelines and recommendations from the American College of Rheumatology and EULAR show a lack of clarity regarding race information, and an “urgent need” for standardized race reporting, researchers wrote.
According to the study, published in Arthritis Care & Research, only a quarter of the sampled guidelines mention race, and among those that did, none included clear definitions. In addition, race was often conflated with ethnicity or genetic ancestry, and, in at least one case, research with insufficient racial diversity was used to make race-based recommendations for Black patients.
“Our study found race and ethnicity terms are commonly used in rheumatology guidelines, yet their definitions and appropriate use are often ill-defined and oversimplified,” Rose McKeon Olson, MD, of Brigham and Women’s Hospital, in Boston, told Healio Rheumatology. “It is essential to ensure that race terms are defined and used appropriately to prevent worsening of existing racial disparities, as well as to accurately define, measure, and provide high-quality care to patients of all races and ethnicities.”
To analyze the inclusion of race in rheumatology practice guidelines, as well as how it is defined and used in diagnostic and treatment recommendations, Olson and coauthor Candace H. Feldman, MD, ScD, also of Brigham and Women’s Hospital, searched for race and ethnicity terms in all clinical practice guidelines published by the ACR and EULAR between 2010 and 2020. In all, the researchers identified 23 ACR clinical practice guidelines and 42 EULAR recommendations for inclusion.
Olson and Feldman analyzed and summarized their findings through standardized data abstraction forms, and identified key themes using a thematic analysis approach. The pair then drafted a series of recommendations to improve consistency and accuracy, as well as encourage a “critical reanalysis of race-based diagnostic tools and treatment options” and address structural causes of racial disparities, they wrote.
According to the researchers, 16 of the 65 included guidelines and recommendations used race terms in their text. However, none clearly defined race, and race was often used interchangeably with ethnicity or genetic ancestry. In addition, racial categories varied considerably by guideline, and often used classifications that oversimplified and excluded non-white races.
Olson and Feldman also reported that research with insufficient racial diversity had been used to make race-based recommendations for Black patients that may not be generalizable. Further, recommendations using research on predominantly white patients “reinforced data of white populations as normative, and perpetuated race-based stereotypes, especially for rare diseases,” they wrote. The included clinical practice guidelines also failed to discuss structural causes of identified racial disparities.
Based on these findings, Olson and Feldman drafted the following six recommendations:
- Use accurate definitions of race, ethnicity and genetic ancestry, and be clear about their appropriate use and limitations;
- Use nuanced, standardized categories of race and ethnicity, noting their limitations in demonstrating true population diversity;
- Add country-of-origin information to demographic data;
- Increase racial diversity in research;
- Thoroughly assess all race-based recommendations, make note of potential unintended consequences and remove current race-based recommendations that are based on insufficient evidence; and
- Collect and report data on patients’ exposure to structural racism, including residential segregation and access to stable housing, transportation, health care, healthy food and voting sites.
“There is need for improved racial representation in rheumatology research,” Olson said. “Where racial disparities in rheumatology exist, there is urgent need to collect and report on structural factors that contributed to the disparities. Any race-based clinical care recommendation should be critically analyzed to ensure it is accurate, and does not worsen existing racial health disparities.”