Background/Purpose: Despite a disproportionate burden of systemic lupus erythematosus (SLE) and disparities in adverse outcomes among Black compared to white individuals, people of color are underrepresented in SLE clinical trials. Our aims were: 1) to leverage a community-academic partnership in Boston and Chicago to develop clinical trial education modules for individuals who self-identify as Black with SLE and 2) to recruit and train trusted Popular Opinion Leaders (POLs) with robust social networks to disseminate this information in their communities. Due to COVID-19, we adapted the traditional, in-person, community-based POL model to a virtual platform and assessed the feasibility of this approach.

Methods: Rheumatologists and public health experts from two academic institutions developed training modules in partnership with community leaders and SLE advocates in Boston and Chicago. POLs age >18 years old with and without SLE were recruited through community- and hospital-based networks from Boston and Chicago neighborhoods with high proportions of Black individuals. To train the POLs, five presentations were delivered using an interactive, virtual platform. Modules included: 1) Description of the POL Model, 2-3) Introduction to Clinical Trials, I/II, 4) History of Racism and Clinical Trials, and 5) Clinical Trials: Barriers, Facilitators, and Mediators. POLs completed pre and post tests for the modules, which were compared using paired t-tests. POLs were also taught to use virtual platforms to share information learned with their social networks. POLs reported their dissemination data.

Results: Nineteen POLs were recruited in Boston and 17 in Chicago (Table). In Boston, 18 (95%) were female, 13 (68%) self-identified as Black, and mean age was 55.6 years. In Chicago, 14 (82%) were female, 16 (94%) self-identified as Black, and mean age was 52.8 years. Retention of POLs throughout the training was 82% both in Boston and Chicago. For the two-part clinical trials module, POLs’ knowledge of clinical trials improved significantly overall (mean difference of 3.92 points, 95% CI 3.35-5.89), and separately in Boston (mean difference of 2.80 points, 95% CI 3.33-7.18,) and Chicago (mean difference of 5.45 points, 95% CI 2.42-6.10). As of May 2021, 7 POLs documented 36 encounters and reached 1,023 total individuals; dissemination is ongoing. Boston POLs reached 233 people, including 122 individuals through a sorority newsletter, 104 through Zoom, 6 through phone calls, and 1 in person. Chicago POLs personally reached 240 individuals, including 163 people in a social media group for SLE patients and families, as well as 550 individuals through email interactions.

Conclusion: The POL model was effectively adapted to a virtual program in the context of the COVID-19 pandemic. Modules developed jointly by academic and community partners were implemented and successfully improved knowledge regarding clinical trials. POL retention was high, possibly due to the convenience of virtual trainings and the sense of community developed through the training sessions. POLs successfully disseminated information virtually about clinical trials. Further studies are needed to determine impact on the diversity of SLE trial enrollment.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/use-of-a-popular-opinion-leader-model-to-disseminate-information-virtually-about-clinical-trial-enrollment-to-people-of-color-with-lupus/