Improving Community Advisory Board Engagement In Precision Medicine Research To Reduce Health Disparities

Community Advisory Boards (CABs) are used in efforts to reduce health disparities; however, there is little documentation in the literature regarding their use in precision medicine research. In this case study, an academic-CAB partnership developed a questionnaire and patient educational materials for two precision smoking cessation interventions that involved use of genetic information. The community-engaged research (CEnR) literature provided a framework for enhancing benefits to CAB members involved in developing research documents for use with a low-income, ethnically diverse population of smokers. The academic partners integrated three CEnR strategies: 1) in-meeting statements acknowledging their desire to learn from community partners, 2) in-meeting written feedback to and from community partners, and 3) a survey to obtain CAB member feedback post-meetings. Strategies 1 and 2 yielded modifications to pertinent study materials, as well as suggestions for improving meeting operations that were then adopted, as appropriate, by the academic partners. The survey indicated that CAB members valued the meeting procedure changes which appeared to have contributed to improvements in attendance and satisfaction with the meetings. Further operationalization of relevant partnership constructs and development of tools for measuring these aspects of community-academic partnerships is warranted to support community engagement in precision medicine research studies

Formative Research to Design a Culturally-appropriate Cancer Clinical Trial Education Program to Increase Participation of African American and Latino Communities

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

A Tailored Educational Program to Improve Cancer Clinical Trial Participation among African Americans and Latinos

Background: Participation in cancer clinical trials is low in minorities, particularly among African Americans and Latinos. Lack of awareness and knowledge regarding clinical trials are major barriers to participation. Objective: To develop a tailored, educational program to increase awareness and understanding of cancer clinical trials. Methods: We used an iterative, community engaged adaptation process to create culturally and linguistically appropriate content for African Americans and Latinos. We first identified an existing clinical trials education program and held a focus group with peer educators who previously delivered the program. Next we conducted 9 focus groups (4 with African Americans, 5 with Latino) (N=85) to obtain input on ways to improve the educational program. We then revised the program based on feedback. The community review board and the researcher reviewed the data summary and finalized the educational program. Results: The key focus group findings were used to identify and integrate content related to cancer (e.g., definition, risk factors, statistics such as top cancer deaths by race and gender), clinical trials (e.g., definition, process, participation costs, and clinical trial resources). Minor changes were also in content, length (i.e., shorter), color scheme (i.e., lighter tones), and visual aids. We also developed testimonials from the African American and Latino researcher and community member perspectives on cancer clinical trial participation. Conclusion: The tailored clinical trial educational program includes content and format deemed more appropriate and relevant to African Americans and Latinos. The new program will be delivered in community settings and compared to the untailored version to determine impact on knowledge, aware, and willingness to participate in clinical trials