127 - From Advisors to Investigators: A Community-Led Study to Address Provider Stigma in Sickle Cell Disease

Publication Number: 2122.127

Stamatia C. Vorri, NYCHH Jacobi / Albert Einstein College of Medicine, Bronx, NY, United States; Mai Nguyen Mintz, Jacobi Medical Center, New Rochelle, NY, United States; Melanie M. Aviles, NYC Health + Hospitals/Jacobi Medical Center, Bronx, NY, United States; Linda Bulone, Queens Hospital Cancer Center, Jamaica, NY, United States; Rick M. Zong, NYC Health + Hospitals/Jacobi, New York City, NY, United States; Muhammad Ali Lak, Icahn School of Medicine at Mount Sinai Queens NYC H+H, New York, NY, United States; Sindy Mora Garavito, N/A, Yonkers, NY, United States; Kenneth Rivlin, NYC Health + Hospitals/Jacobi, Bronx, NY, United States

Background: Historically, community engagement in research has been mostly advisory, with studies designed and led by academics. In our project testing whether experiential learning improves clinical trial literacy among Community Advisory Board (CAB) members, the CAB-supported by residents-designed and implemented an educational intervention to address provider stigma toward people with SCD. CAB members identified stigma as their top concern, describing experiences of not being believed and being labeled as "sicklers" or "drug seekers." These accounts align with evidence that stigma erodes trust and worsens outcomes. This study evaluated the CAB's intervention.

Objective: 1.To test whether a CAB-designed, resident-implemented intervention improves provider attitudes toward SCD
2.To compare effects across three settings: inpatient residents at two hospitals and ED providers at one

Design/Methods: We used a pre/post design with Inpatient residents at Site 1 (Pediatrics + IM, N = 37), ED providers (N = 16), and Inpatient residents at Site 2 (IM, N = 24). The CAB intervention consisted of a patient video, review of stigmatizing versus neutral notes, and a resident-led discussion on pain management. We used the validated General Perceptions About SCD Patients Scale to measure attitudes toward SCD patients. We analyzed baseline group differences (ANOVA), within-group change (paired t-tests), and between-group differences (ANOVA). The study is IRB exempt.

Results: The CAB-designed intervention significantly improved provider attitudes across all settings. All groups improved on the highest CAB-priority item: believing in patients' pain. Providers in all settings were less likely to view "appearing comfortable in severe pain" as drug-seeking (p < 0.001). Both inpatient groups showed improvement on the item "requests specific opioid".
Patterns varied by microculture. Inpatient S1 showed broad gains, improving in 11 of 14 negative-attitude items (p < 0.0001). Inpatient S2 improved mainly in positive attitudes across 3 of 4 items (p = 0.001). ED S1 showed fewer changes because baseline stigma was already low-a floor effect.

Conclusion(s): A CAB-led intervention can reduce provider stigma in diverse clinical contexts. Differences in patterns reflect microcultures, not failure. Some teams shifted away from negative biases, while others deepened their empathy and understanding. Baseline attitudes and context shape which stigma dimensions are modifiable. This study demonstrates that community leaders can move beyond advisory roles and serve as investigators, identifying, designing, and evaluating interventions to advance equity.

Table 1.
Comparative P-Values (Paired T-Test) by Group
P-values < 0.05 bolded; S1 = Site 1, S2 = Site 2.