Collaborative Development of Clinical Trials Education Programs for African-American Community-Based Organizations

Abstract

This paper describes the use of a unique ”Learning and Feedback” approach to tailor cancer clinical trials education programs for Community Bridges, a peer training intervention designed for African American communities in North Carolina. Generic community education modules were demonstrated with key community leaders who were designated as trainers. Quantitative and qualitative assessments were provided on understanding of content, comfort with material and cultural relevance. The generic materials were adapted into three revised modules, all featuring key messages about cancer clinical trials, discussion regarding distrust of medical research, common misconceptions about trials, patient protections, and a call to action to prompt increased inquiry about locally available trials. The revised modules were then used as part of a train-the-trainer program with 12 African American community leaders. ENACCT’s use of the Learning and Feedback process is an innovative method for culturally adapting clinical trials education.

Evaluating a Community-Partnered Cancer Clinical Trials Pilot Intervention with African American Communities

“…ENACCT facilitated this step-wise approach by demonstrating three community education modules originally developed for their Pilot Education Program [16] for the collaborating community organizations and UNC-based research team. Blakeney and colleagues [19] describe in detail the Learning and Feedback approach, recommended changes, and resulting content and structure adaptations to the three module formats. Learning and Feedback participants recommended tailoring modules to facilitate delivery to audiences within limited blocks of time, incorporate explicit acknowledgement of participant concerns including past research abuses within African American communities, adding personalized examples of individuals and communities benefiting from trials, and packaging the intervention with a succinct, memorable, and visually appealing call to action.…”

“…The same community organization staff actively involved in the Learning and Feedback sessions [19] were invited to participate as trainers and encouraged to bring at least two additional members of their organizations to participate. Each organization selected at least one lead staff member (executive director or director of programs) to attend the training.…”

A systematic review of components of community-based organisation engagement

“…Although the effectiveness of CBPR and the use of CBOs for research has been documented in the literature, there is a paucity in research that evaluates how best to engage CBOs. Most of the literature on engagement evaluates engagement of study participants or community members (Blakeney et al, 2015;Clinical and Translational Science Awards Consortium, 2011;Drake & Whitley, 2014;Patel et al, 2011). Although the studies in this review identified major components of CBOE, only a few of them specifically examined engagement of CBOs as an outcome (Akintobi et al, 2012;Bloom et al, 2009;Boutain & McNees, 2013;Kakietek et al, 2013).…”

“…Community-based organisations (CBOs) are an important part of research and creating successful interventions (Blakeney et al, 2015;Clinical and Translational Science Awards Consortium, 2011). A CBO is defined as a public or private non-profit organisation that represents a community or a specific part of a larger community, and targets meeting a specific need in that community (Caldwell, Reyes, Rowe, Weinert, & Israel, 2015;Glik et al, 2014;National Network of Libraries of Medicine, 2015).…”

“…A CBO is defined as a public or private non-profit organisation that represents a community or a specific part of a larger community, and targets meeting a specific need in that community (Caldwell, Reyes, Rowe, Weinert, & Israel, 2015;Glik et al, 2014;National Network of Libraries of Medicine, 2015). CBOs have been shown to provide access to target clients and resources needed for research/interventions, serve as liaisons between researchers and the community, disseminate findings and troubleshoot unexpected challenges (Blakeney et al, 2015;Burkhalter et al, 2013;Caldwell et al, 2015;Houston, Harada, & Makinodan, 2002). CBOs can improve the outcomes and relevance of research or interventions conducted in communities (Akintobi et al, 2012;Burkhalter et al, 2013;Caldwell et al, 2015;Darling et al, 2015).…”