Exposing Racial Bias to Confront Care Chasms: Innovations in the Sickle Cell Disease Curriculum at Rush Medical College.

Abstract

Purpose: Sickle cell disease (SCD) is an autosomal recessive blood disorder that affects 100,000 Americans and 1 in 365 African American births. Individuals with SCD face lifelong complications, such as pain crises, infections, anemia, acute chest syndrome, gallstones, and strokes. Despite the severity and complexity of this condition, it is not uncommon for SCD patients to face significant challenges accessing quality health care. 1 Many providers have implicit biases surrounding treating pain crises with prescription pain medications, and others have not been adequately trained on how to prevent complications or identify changes in organ function. 2,3 Discontinuity of care, disease complexity, and the racialization of “drug seeking behavior” has led to poor outcomes, distrust of the health care system, and a failing therapeutic alliance. Approach: Our vision is to improve SCD patient care by empowering patients, improving care plans, and enhancing medical student education. The latter will be the focus of this abstract, and has been a key focus area in our efforts thus far. We started by formulating a survey to assess Rush students’ baseline knowledge in the domains of racial bias, health inequities, and pathophysiology (pulmonary, neurologic, hematologic, gastrointestinal, and immune systems). After uncovering gaps in knowledge, we began the process of transforming the preclerkship education modules to highlight the complex pathophysiology and psychosocial dynamics of SCD. Patient panels, antibias training, and lectures from specialists are key elements that we are working to incorporate. In addition, we are using Rush resources like the Micro-advocate Simulation Lab to teach empathy and advocacy skills. Outcomes: We gathered data on both preclerkship and clerkship students’ baseline knowledge level to gain insight into the optimal curricular design. Initial survey results of preclerkship students (MS2s, N = 77) in November 2021 showed that only 11.3% of respondents ranked their knowledge level as “knowledgeable/able to teach others about SCD”, with 47.9% of students ranking their knowledge level as “limited/low”. Particular knowledge gaps included medication mechanics, stem cell technology, important clinical labs and inflammatory markers, pathophysiology, screenings for pulmonary and neurologic function, blood transfusion criteria, and the politicization of the Sickle Cell Trait. Clerkship students (MS3s, N = 78) took a similar survey in August 2021, following a focused 2-hour workshop on SCD Pathophysiology & Bias that was piloted this year and featured personal reflections from three patients. Students showed an improvement in every knowledge domain, including qualitative knowledge regarding historic injustice. Of note, 76.8% of clerkship students agreed with the statement, “We need more training on the multiorgan system manifestations of SCD during M1 + M2 year.” Discussion: Our initial results underscore the importance of approaching curricular content with a critical lens that prioritizes equity, advocacy, and patient outcomes. Learners’ SCD knowledge grew significantly after interactive and informative modules that highlighted patient perspectives. Most learners felt these sessions would be best placed in the foundational preclerkship years alongside other “high yield” conditions like Cystic Fibrosis and Hemophilia (which each affect fewer than half the number of U.S. patients than SCD), further underlining the need to empower future generations of physicians to promote social justice. Significance: Our longitudinal project highlights the importance of making sustainable curriculum changes to include diseases that have traditionally been left out despite their prevalence, complexity, and severity. We are currently engaging in a myriad of other SCD initiatives, including planning a health fair in Lawndale, incorporating individualized pain plans into the EMR, designing training modules for different health care roles, and engaging in policy reform with our Illinois House Rep. We are hopeful that our efforts to address SCD-related health inequities will inspire innovative efforts at other hospitals, and we hope to collaborate with other institutions.