Iranian Donors Save Lives: Collaborating with Community Advocates to Address Racial Disparity in Access to Unrelated Donors for Allogeneic Transplantation

Introduction While engaging with underserved communities is critical to address disparities impacting these communities, little work has explored how to collaborate with community advocates to accomplish this goal. Here, we describe a campaign developed with Iranian-Canadian advocates to engage Iranian peoples, an underserved population & largely untapped donor pool, to stem cell donation, & we examine barriers & facilitators to community engagement. Methods We collaborated with Iranian-Canadian advocates to develop Iranian Donors Save Lives, a campaign to address racial disparity in donor pools impacting Iranian peoples. English & Farsi multimedia resources were developed to engage Iranian peoples to donation. Multimedia were reviewed for accuracy by a transplant physician & for appeal by Iranian advocates, then published to stemcellclub.ca/Iranian & deployed by advocates to recruit Iranian donors. Focus groups were conducted with Iranian-Canadian young adults, with qualitative & quantitative analyses evaluating the multimedia's impact on participants’ knowledge & attitudes to donation, & exploring barriers & facilitators to community engagement. Results Multimedia developed featured 33 Iranian advocates & included infographics; video testimonials & TikToks starring Iranian advocates & social media influencers; stories & appeals from Iranian patients; & statements from Iranian physicians, Fig 1A-D.In surveys of 39 Iranian-Canadians (all 17-35 yrs; 49% male), after viewing the multimedia, donation knowledge improved (72% vs 91%, p = .001); ambivalence decreased (47% vs 30%, p = .002); & willingness to register as donors increased (54% vs 77%, p = .032), Fig 2A-B. Qualitative analysis of feedback from focus groups with these participants identified barriers (lack of knowledge of racial disparity; stigma around health; mistrust of healthcare) & facilitators (stories from community members personally impacted; cultural references; use of languages spoken; tailored communication) to community engagement & provided rich examples of how the multimedia overcame barriers & incorporated facilitators to engagement, Fig 3A-B.In 2023, advocates spearheaded a Nowruz recruitment campaign including 18 drives at Iranian community events across Canada. Ahead of these drives, multimedia resources were shared by Iranian partner groups & amplified by media outlets (ie CBC News, CTV News). Overall, 510 potential donors were recruited. Conclusions Through collaboration with Iranian advocates, we developed high quality multimedia which overcame barriers & incorporated facilitators to community engagement, & we spearheaded a national campaign to engage Iranian peoples to donation, recruiting hundreds of Iranian donors. Our work is a model for healthcare organization partnership with community advocates from underserved populations to address health disparities.