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A Critical Look at Race-Based Practices in Rheumatology Guidelines
Rose McKeon Olson1, Candace H Feldman1
1Brigham and Women's Hospital, Boston, Massachusetts.
Objective:
To assess how race has been incorporated into rheumatology practice guidelines, including how race is defined and used in diagnostic and treatment recommendations.
Methods:
We searched race and ethnicity terms in all clinical practice guidelines from the American College of Rheumatology (ACR) and European Alliance of Associations for Rheumatology (EULAR) that were published between 2010 and 2020 and publicly available on professional society websites. Findings were summarized and assessed through standardized data abstraction forms. Key themes were identified through a thematic analysis approach.
Results:
A total of 23 ACR clinical practice guidelines and 42 EULAR recommendations were reviewed. In total, 16 of 65 (25%) of the guidelines used race terms in their text. No guideline clearly defined race, and race was often conflated with ethnicity and/or genetic ancestry. Reported racial categories varied substantially by guideline and often used classifications that oversimplified and excluded non-White races. Research with insufficient racial diversity was used to make race-based recommendations for Black patients that may not be generalizable. Additionally, recommendations using research on predominantly White populations reinforced data of White populations as normative and perpetuated race-based stereotypes, especially for rare diseases. Structural causes of identified racial disparities were not discussed in clinical guidelines.
Conclusion:
There is an urgent need for standardized race reporting in rheumatology. Recommendations are provided to enhance consistency and accuracy of race and ethnicity terms, mitigate conflation of race with ethnicity or genetic ancestry, encourage a critical reanalysis of race-based diagnostic tools and treatment options, and better address the structural causes of racial disparities.
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