Adult participation in cancer clinical trials (CCTs) nationally remains less than 5%, with even fewer participants among communities of color. Barriers to participation are experienced by patients, providers, as well as research staff. Efforts to improve diverse populations’ interest and participation in cancer clinical trials requires a multipronged approach targeting key stakeholders.

The Education Network to Advance Cancer Clinical Trials (ENACCT) is the only national organization solely devoted to evidence-based, community-centered approaches to CCTs education. In 2006, ENACCT launched the Pilot Education Program (PEP), a 3-year initiative which sought to improve CCT awareness, access, and accrual, particularly among medically underserved populations. Three diverse PEP community sites (Boston MA, Tacoma WA, and Decatur, IL) participated in training of community leaders (CLs) and health care providers (HCPs), using an action-oriented train the trainer curriculum that addressed cancer health disparities, past research abuses, and current patient protections, as well as the significance of diverse CCTs participation as a social justice issue. Multiple training modules, as well as educational “palm cards” were translated to Spanish and Korean. Workshops for CCT staff focused on strategies to improve recruitment and retention practices to reach medically underserved populations, highlighting the role of Culturally and Linguistically Appropriate Services (CLAS) standards in the clinical research setting.

PEP reached 461 HCPs (62% nurses), 926 CLs (66% minority) and 61 CCT staff (13% minority) in educational workshops. Four thousand individuals were reached through community presentations and over 49,000 educational palm cards were distributed. Post training, over 60% of CLs trained said they shared messages about CCTs with at least one other person. HCP trainees had more favorable attitudes and beliefs regarding CCTs and HCPs’ role in CCT referral from pre-to post-workshop assessment. Additionally, at first assessment post-training, 81 % of CLs, 95% of HCPs and 94% of CCT staff agreed that equal access to CCTs is a matter of social justice. Nearly 100 unique patient profiles were created via a national CCTs matching service. ENACCT's training overall positively improved recognition of CCTs access and participation as a social justice issue among stakeholders. Successful community based interventions on CCTs must meet the needs of diverse populations by (1) tailoring key education messages to be culturally relevant and (2) building synergistic relationships among stakeholders to reduce barriers to trial access.

Citation Information: Cancer Epidemiol Biomarkers Prev 2010;19(10 Suppl):A25.