“It’s crazy! None of the pictures online look like me!” a young Black woman with systemic lupus earythematosus (SLE) exclaimed. We could only affirm her observation and agree that it was unfair.
Like many patients with SLE, our patient was diagnosed at a young age and suffered severe complications that required kidney transplantation before her 30th birthday. Patients with skin of color (SOC) have been shown to experience worse health outcomes than their white counterparts, a disparity that is amplified among patients with SLE and rheumatoid arthritis (RA).1 Despite this patient’s risk for worse outcomes, she found herself underrepresented in images published to depict her diagnosis and educate patients, caregivers and healthcare practitioners about her condition.
This experience complements research demonstrating that patients with SOC are underrepresented in medical resources. This absence extends to published images, as well as information about how diagnoses may manifest differently in different skin types. Materials from general medical education, dermatology and plastic surgery disproportionately represent white patients in their content.2-4 This year, two studies published in Arthritis Care & Research show rheumatology resources also underrepresent SOC.
In a review of images for musculoskeletal and rheumatic diseases published in major rheumatology textbooks, UpToDate and The New England Journal of Medicine, Strait et al. revealed a publishing bias for what they categorized as “light” skin tones.5
Rana et al. expanded on this work through the collection of images specifically representing SLE in textbooks, journals and online image libraries within rheumatology, dermatology and internal medicine, as well as a comprehensive search of Google Images, with similar results.6 Because patients with SOC who also have SLE or RA experience the most disparate health outcomes of rheumatic diseases, Strait et al. then performed a post hoc comparison of skin color within images of SLE or RA to estimate the number of patients with these conditions in the U.S. population. The studies showed the underrepresentation of SOC is most notable among patients with SLE or RA and in photos on Google Images.5,6
This publication bias contributes to poorer health outcomes observed in this patient population. Resources help providers develop clinical heuristics, but when SOC is excluded from these materials, practitioners cannot easily achieve expertise caring for conditions in patients with SOC. Providers report lower confidence managing cutaneous pathology in SOC.7 In conditions like SLE and RA, in which patients with SOC are vulnerable to misdiagnosis, it is essential that clinicians be able to recognize disease manifestations in all skin tones to facilitate early diagnosis and treatment.
The lack of SOC in published images also affects relationships between patients and clinicians. Patients recognize their exclusion, especially among easily accessible online images, and may interpret this bias as though the profession of medicine and, by corollary, individual providers place less value on their well-being than that of white patients who are more prominently depicted. This may contribute to a sense of mistrust in the healthcare system and the perception that patients receive worse care from practitioners of a different race or ethnicity.8
The representation of skin tones in medical education resources also affects practitioners in training and healthcare environments. A medical student who identifies as Black noticed the materials presented in her classes excluded patients with SOC.9 As a result, she felt “othered,” as though skin color separated her from her peers, as well as the patients she was being trained to treat. This demonstrates that medical resources can contribute to an exclusionary culture.