PRSYM—In recent years, the medical community has started to focus on three important and inter-related topics with wide-ranging effects on patient health and care: diversity, equity and inclusion. At the virtual 2021 Pediatric Rheumatology Symposium (PRSYM), a series of thoughtful speakers discussed this topic in earnest and helped provide the rationale and blueprint for better understanding these critical concepts.
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Tamar Rubinstein, MD, MS, pediatric rheumatologist at Children’s Hospital at Montefiore and an assistant professor of pediatrics at Albert Einstein College of Medicine, The Bronx, N.Y., began the session by discussing health and healthcare disparities in pediatric rheumatology.
Dr. Rubinstein noted the term health disparity entered the lexicon of physicians in the 1990s and was meant to describe health differences that correlate with social, economic and/or environmental disadvantage. In essence, health disparities are the observed consequences faced by groups of people who have encountered systemic obstacles, such as financial instability, poor access to care and discrimination.
A growing body of evidence indicates that access to care, disease severity, morbidity and mortality, quality of life and mental health issues are among the outcomes that differ substantially between white patients and those of minority ethnic groups: Dr. Rubinstein noted that Black youth with juvenile idiopathic arthritis (JIA) are more likely to have joint damage, worse disease activity and worse disease-related pain than white youth with the same condition.1,2 Lupus is the fifth leading cause of death among Black adolescents and young adult, Black women in the U.S.3
Although many minority groups are likely under-represented in registries, such as the Childhood Arthritis and Rheumatology Research Alliance (CARRA), and there’s a paucity of data regarding healthcare disparities among pediatric rheumatology patients with conditions other than JIA and lupus, Dr. Rubinstein presented compelling evidence that healthcare disparities are a significant problem.
Dr. Rubinstein advocated for a race-conscious approach to healthcare disparities rather than a race-based approach. In a race-based approach, race is regarded as the main risk factor for disparities. Differences in health outcomes are seen as rooted in the possibility of biologic differences between racial groups, with the implication that certain racial groups are inherently diseased.
In a race-conscious approach, racism is the main risk factor in question. Differences in outcomes are evaluated in the context of social and power constructs, and the consequences of structural racism are the main area of interest.
Dr. Rubinstein argued that social determinants of health are what drive healthcare disparities. These determinants include education, access to healthcare, housing, income and sociocultural factors that may advantage or disadvantage a particular group.
At the societal level, important contributors to health outcomes include attitudes and prejudices of group identification, exposure to or threat of violence, racism and discrimination.
At the healthcare system level, factors related to health outcomes include access to pediatric rheumatologic care, coordination or lack of coordination of complex care, the presence or absence of a diverse workforce that reflects the patient population, and systemic and implicit bias in medical training and practice.
At the community level, factors related to health outcomes may include environmental toxins, lack of access to healthy food, the quality of the school system and the physical environment.
Family factors of note include income, food security, parents’ level of education and social capital. At the level of the individual child, important factors affecting health outcomes include mental health, sense of self-efficacy, relationships with healthcare providers and the ability to participate in shared decision making with pediatric rheumatologists.
Ashira Blazer, MD, MSCI, assistant professor, Division of Rheumatology, New York University School of Medicine, discussed diversity in rheumatology and the road to equitable care.
Inclusiveness, according to Dr. Blazer, is the process of including people who may otherwise be excluded, such as individuals with physical or mental disabilities, or members of minority groups. Inclusiveness, she argued, is an important concept that applies to physicians, patients, support staff and community partners. In an era in which precision medicine is aspirational and, hopefully, an increasingly frequent part of routine care, changing the concept of the average American and using inclusiveness to bring together all members of the population will help us better understand disease pathogenesis and provide equitable and personalized care.
Understanding the history of race-based prejudices is indispensable to our understanding of biases that still exist today, said Dr. Blazer. She described the history of the American caste system in which individuals of African descent were designated the least social capital, individuals of European descent were allotted the most social capital and Native Americans were placed somewhere in between.
Dr. Blazer provided a startling comparison between the writings of Samuel Cartwright, MD, a physician in the Antebellum South who, in 1851, published a treatise on biological differences thought, at the time, to separate Black people from other racial groups, and a 2016 survey of medical residents in the U.S. that demonstrated racial bias in pain assessment and treatment, as well as false beliefs about biological differences between Blacks and whites.4 In essence, many myths about racial differences popularized centuries ago persist in the minds of physicians (and the public) today.
The Flexner Report of 1910, which disparaged Black medical colleges and led to the closure of a majority of these educational institutions, had a lasting, negative impact on diversity in the U.S. physician workforce. Dr. Blazer said one effect of this report, and other systemic changes in medical education, has been only a 1.4% growth in the number of Black physicians over the past 120 years. No rheumatology fellowship training programs currently exist at historically Black medical institutions.
In this historical context, Dr. Blazer noted that it’s essential the ACR and other organizations commit to increasing diversity and inclusiveness in the field of rheumatology.
Rheumatology Care & Workforce
Andrea Knight, MD, MSCE, pediatric rheumatologist at the Hospital for Sick Children, Philadelphia, and an assistant professor at the University of Toronto, Canada, provided a practical model for increasing diversity, equity and inclusion in pediatric rheumatology. She encouraged rheumatologists to:
- Create a culturally safe space for patients and families;
- Integrate patient and family-centered communication in routine practice;
- Hire and train a diverse workforce; and
- Advocate for accessible resources for patients.
She said developing a diverse workforce at four stages along the career pipeline: engaging students at an early age, recruiting minority students into training programs, retaining individuals after they have completed their training and providing the resources to sustain and nourish their careers.
We can help build up trainees and colleagues from marginalized groups by providing mentorship, sponsorship and allyship, according to Dr. Knight. She noted that health equity must continue to grow as an important topic in rheumatology research. Partnering for systemic change will require engagement, advocacy and policy making from community leaders, patient foundations, schools and educational organizations, and local, state and federal government.
It’s clear we have a long way to go to achieve diversity, equity and inclusion in rheumatology, but it’s possible with such trailblazers as Dr. Rubinstein, Dr. Blazer and Dr. Knight leading the way.
Jason Liebowitz, MD, completed his fellowship in rheumatology at Johns Hopkins University, Baltimore, where he also earned his medical degree. He is currently in practice with Skylands Medical Group, N.J.
- Ringold S, Beukelman T, Nigrovic PA, et al. Race, ethnicity and disease outcomes in juvenile idiopathic arthritis: A cross-sectional analysis of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. J Rheumatol. 2013 Jun;40(6):936–942. Epub 2013 Apr 15.
- Chang JC, Xiao R, Burnham JM, et al. Longitudinal assessment of racial disparities in juvenile idiopathic arthritis disease activity in a treat-to-target intervention. Pediatr Rheumatol Online J. 2020 Nov 13;18(1):88.
- Yen EY, Singh RR. Brief Report: Lupus—an unrecognized leading cause of death in young females: A population-based study using nationwide death certificates, 2000–2015. Arthritis Rheumatol. 2018 Aug;70(8):1251–1255. Epub 2018 Jun 27.
- Hoffman KM, Trawalter S, Axt JR, et al. Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proc Natl Acad Sci U S A. 2016 Apr 19;113(16):4296–4301. Epub 2016 Apr 4.