Formative research to design a culturally-appropriate cancer clinical trial education program to increase participation of African American and Latino communities

Abstract

Background Addressing knowledge deficiencies about cancer clinical trials and biospecimen donation can potentially improve participation among racial and ethnic minorities. This paper describes the formative research process used to design a culturally-appropriate cancer clinical trials education program for African American and Latino communities. We characterized community member feedback and its integration into the program. Methods We incorporated three engagement approaches into the formative research process to iteratively develop the program: including community-based organization (CBO) leaders as research team members, conducting focus groups and cognitive interviews with community members as reviewers/consultants, and interacting with two community advisory groups. An iterative-deductive approach was used to analyze focus group data. Qualitative data from advisory groups and community members were compiled and used to finalize the program. Results Focus group themes were: 1) Community Perspectives on Overall Presentation; 2) Community Opinions and Questions on the Content of the Presentation; 3) Culturally Specific Issues to Participation in Cancer Clinical Trials; 4) Barriers to Clinical Trial Participation; and 5) Perspectives of Community Health Educators. Feedback was documented during reviews by scientific experts and community members with suggestions to ensure cultural appropriateness using peripheral, evidential, linguistic, sociocultural strategies, and constituent-involving. The final program consisted of two versions (English and Spanish) of a culturally-appropriate slide presentation with speaker notes and videos representing community member and researcher testimonials. Conclusions Incorporating multiple community engagement approaches into formative research processes can facilitate the inclusion of multiple community perspectives and enhance the cultural-appropriateness of the programs designed to promote cancer clinical trial participation among African Americans and Latinos.

Addressing racial/ethnic disparities in cancer clinical trials: Everyone has a role to play

“…Educational interventions were, in fact, shown to increase willingness to participate in clinical trials, although different tools may be needed for specific racial/ethnic minority groups 37 . Considerations of community perspectives and cultural appropriateness would surely increase the success of such educational tools and initiatives 38,39 . Science is often presented in a format that lacks cultural acknowledgment or evidence of beneficial relevance to the communities (eg, testimonials by ethnically diverse cancer survivors) or may fail to address barriers to trust.…”

A pilot study of a culturally-appropriate, educational intervention to increase participation in cancer clinical trials among African Americans and Latinos

“…A multi-layered community-engagement process was used to develop the program while intricately interweaving community engagement to ensure the needs of the community were met. See Cunningham et al for a full description of program development [40]. It consists of two culturally-appropriate slide presentations designed for African Americans and Latinos and video testimonials on cancer clinical trials followed by questions and answers.…”

“…In this pilot study, we examined the impact of a culturally-appropriate, educational program on short-term, clinical trial outcomes among African Americans and Latinos. The development of this educational program has been described previously [40]. We hypothesized that the program would lead to an increase in knowledge, trust in medical researchers, and willingness to participate in clinical trials within the overall sample and by race/ethnicity.…”

“…To implement the program in the pilot study, we trained or re-trained six CHEs [40] training evaluation included trainee practice sessions. The trainee had to demonstrate mastery in the following four areas: 1) understanding of cancer disease and how to prevent it; 2) de ning clinical trials and their process; 3) describing the bene ts and risks of clinical trial participation; and 4) discussing the process of clinical trial enrollment and participant protections.…”

Call to Action for Enhanced Equity and Inclusion in Cannabis Research

“…52 Communicating with potential community or recruitment partners about values before commencing with a study can guide researchers on what level of engagement participants may be receptive to, or even inform research design to be more reflexive to the interests of the community. 53 In the listening session study that was previously mentioned, community members were primarily concerned with prevention of chronic disease, 43 thus researchers working in that area or integrating prevention into their studies would likely be more positively viewed by the community. In addition, communication with key stakeholders through interviews, qualitative focus groups, or listening sessions can reveal barriers that prevent participation before a study commences.…”