Background/Purpose: Lupus is a chronic, autoimmune disease that disproportionately affects African American individuals. Community-based educational interventions that capitalize on rich social networks can be used to promote positive health-seeking norms and behaviors. Our academic-community partnership adapted the CDC’s Popular Opinion Leader (POL) evidence-based practice to develop and implement an African American POL program that leverages community leaders’ social networks to disseminate culturally appropriate lupus education and promote care-seeking norms. The first phase of implementation was in greater Boston neighborhoods with a higher demographic representation of African Americans.

Methods: Academic lupus clinicians and disparities researchers partnered with two local lupus support groups comprised primarily of women of African descent, and a local community-based health education, research and service organization, to recruit POLs. Recruitment targeted community and neighborhood organizations, churches and support groups in medically underserved, predominantly African American neighborhoods. Participants attended four, 2-3 hour POL training sessions at an urban community center. An interactive, live-streaming webinar option was also available. The training included lupus and disparities education, application of the POL model, and strategies to disseminate lupus education, change norms, and document impact. Detailed observational and qualitative data were collected at the trainings and analyzed thematically. POLs disseminated information formally and informally through their social networks and communities and documented conversations, venues and number of people reached.

Results: We trained 18 Boston area POLs, 11 with lupus, 7 without (3/7 with relatives with lupus). Seventeen were female, 3 were ≤45 years, 11 were 45-65 years, 4 were >65 years. 16 were African American, 1 African American/Native American, and 1 Caucasian. Nine held graduate degrees, 6 associates/bachelors’, and 3 high school. Key themes raised by POLs at the trainings included challenges with patient-MD communication, stigma/misconceptions surrounding lupus as a disfiguring or contagious disease, racial and gender discrimination in healthcare, challenges engaging family members, and the importance of support networks for lupus patients. Within 2 months of the training, POLs engaged 269 individuals in 14 neighborhoods in conversations about lupus and the importance of early and sustained care (Table).

Conclusion: We implemented a community-based African American POL model in the greater Boston area which resulted in the ongoing dissemination of lupus-related information through diverse social networks. A parallel implementation initiative is underway in Chicago, as well as quantitative data analysis at both sites, to prepare to scale the intervention nationally.