Increasing participation in clinical trials among ethnic minority populations using CBPR

1. Increasing participation in clinical trials  among ethnic minority populations using CBPR  Patria Rojas, Ph.D., M.P.H, M.S.W Assistant Professor, Department of Health Promotion and Disease Prevention Robert Stempel College of Public Health and Social Work Florida International University

2. Questions • What is CBPR? • Where did it start? • Why CBPR with minority populations?

3. What is Community Based and community Engaged Research? According to a study conducted by MacQueen et al., (2001) community is: Community Engaged Research ? IS a framework or approach for conducting research IS nota method in and of itself Requires partnership development, cooperation and negotiation, and Commitment to addressing various issues Exists on a continuum, with much variation in the strength and intensity of the community-academic collaboration Depends on the research objective, project, participants, community history and local politics, among others “A group of people with diverse characteristics who are linked by social ties, sharecommon perspectives, and engage in joint action in geographical locations or settings.” It is important to remember: communities are not homogenous and seldom speak with one voice. Ask your community partner: how do you define community?

4. Community-Engaged Approaches Less Community involvement Complete Community involvement Community Placed Research Investigator-Driven Research Community Based Participatory Research Community Based Research Community-Driven Research

5. Methodological and Community Capacity Building Tools for Recruitment and Retention • Community Assessments • Focus Groups • Key informant Interviews • Randomized ControlledTrials • Asset Mapping • Social Network Analyses • Survey Research • Photo Voice • Logic Models • Mixed-Methods Research • Community-based trainings (i.e., cultural competency, CBPR, focus group, evaluation, etc.)

6. Important Questions to Ask Before Starting a Community Engaged Recruitment and Retention Approach Are you willing to “work with” the community and not just “work in” the community? Do you and your team have the necessary skills? • Cultural competence • Linguistic • Transparency • Communication • Diverse staff • Listening • Sharing power and control over decisions • Time • Long- term commitment

7. Results from Meta Analysis MOST EFFECTIVE RECRUITMENT STRATEGIES RECRUITMENT BARRIERS Otado, J., Kwagyan, J., Edwards, D., Ukaegbu, A., Rockcliffe, F. and Osafo, N. (2015), Culturally Competent Strategies for Recruitment and Retention of African American Populations into Clinical Trials. Clinical And Translational Science, 8: 460–466. doi:10.1111/cts.12285

8. Results from Meta Analysis BARRIER REDUCTION STRATEGIES RETENTION STRATEGIES Otado, J., Kwagyan, J., Edwards, D., Ukaegbu, A., Rockcliffe, F. and Osafo, N. (2015), Culturally Competent Strategies for Recruitment and Retention of African American Populations into Clinical Trials. Clinical And Translational Science, 8: 460–466. doi:10.1111/cts.12285

9. Considerations for conducting CBPR • The degree of the community involvement is the key factor in CBPR. • Often, the level of time commitment required is substantial, given the time needed for researchers to build and sustain community partnerships. • Historically there has been few researchers have combined this collaborative approach with rigorous methods of scientific inquiry such as a randomized-controlled design

10. Considerations for conducting CBPR (cont.) • Overcoming lack of trust in minority populations (immigrant and anti-immigration sentiment) • Overcoming language barrier • Lack of language appropriate services • Lack of transportation • Lack of insurance • Discrimination • Access to healthcare • Low academic attainment

11. Considering successful CBPR • Reach people where they live • Collaborate with communities where they work and play • Gaining trust • Increase participation and retention • Learn from observational research from the community • Build strong community ties

12. Some Questions to Consider • What are some additional clinical trial recruitment and retention best practices and promising approaches? • In what ways can we engage community members as “ambassadors” for clinical trial recruitment and retention? • How can we create a higher level of awareness among clients, participants, family members, providers, and the community to create better public value for the contribution of participation in clinical trials?

13. Level of involvement of community partners in CBPR ( De Las Nueces, et al., 2012, HealthServicesResearch47:3,PartII(June2012)

14. CBPR in general: • CBPR may be particularly effective in the recruitment of minorities in clinical research • Retaining participants • Overall success of the interventions • CBPR may also be effective in improving behavioral- and health-related outcomes among largely minority populations • CBPR is underutilized in interventions aimed at health care improvement (e.g., improving blood pressure or cancer screening rates) • Future research investigating health services interventions may benefit from the CBPR paradigm

15. Thanks proja003@fiu.edu