Abstract
BackgroundAddressing 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.MethodsWe 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.ResultsFocus 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.ConclusionsIncorporating 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.
Highlights
Addressing knowledge deficiencies about cancer clinical trials and biospecimen donation can potentially improve participation among racial and ethnic minorities
The initial plan was to adapt this existing program; the formative research process and community engagement led to the generation of most new content, which resulted in a new educational program
Phase 3: Reading assessment with community input, 2016–2017 Scientific review We identified two experts in cancer clinical trials from Vanderbilt-Ingram Cancer Center to review the content for accuracy
Summary
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. While cancer death rates are lower among Latinos compared to most racial/ethnic groups, cancer is the leading cause of death for this group [3]. Participation of racial/ethnic minorities in cancer clinical trials and biospecimenbased research is necessary to be able to identify and test prevention, detection, and treatment methods that are effective for these groups. For studies that do succeed, yet have low minority participation, there is uncertainty of whether the medical interventions can be generalized to different racial/ethnic groups to know whether they will work well in these groups [9, 10]. Improving clinical trial participation and biospecimen donation in racial/ethnic minority groups would increase diversity in participation and enable the development of medical interventions that are effective across racial/ethnic groups or need to be modified for specific groups [10]
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