12/26/2017 From Clinical Trial Research to Reality: Recruitment, Retention, and Community-Engaged Research Sherrie Flynt Wallington, PhD Assistant Professor of Oncology Johns Hopkins Institute for Clinical & Translational Research Baltimore, Maryland September 9, 2016

Presentation Objectives Define community and community-engaged research Discuss community-engaged approaches Describe recruitment and retention strategies and barriers Present a Georgetown-Lombardi Recruitment and Retention Approach Questions to consider

What is Community and community Engaged Research? According to a study conducted by MacQueen et al., (2001) community is: IS a framework or approach for conducting research IS not a methodology 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, share common perspectives, and engage in joint action in geographical locations or settings.” It is important to remember, when conducting community-engaged research, that communities are not homogenous and seldom speak with one voice. Ask your community partner: how do you define community? MacQueen, K. M., McLellan, E., Metzger, D. S., Kegeles, S., Strauss, R. P., Scotti, R., … Trotter, R. T. (2001). What Is Community? An Evidence-Based Definition for Participatory Public Health. American Journal of Public Health, 91(12), 1929–1938. At the Core of all community-engaged research is the understanding that the community will be involved in a meaningful way.

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

Methodological and Community Capacity Building Tools for Recruitment and Retention Community Assessments Focus Groups Key informant Interviews Randomized Controlled Trials 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.)

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

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

BARRIER REDUCTION STRATEGIES RETENTION STRATEGIES BARRIER REDUCTION 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

A Georgetown-Lombardi Community Engaged Framework 12/26/2017 A Georgetown-Lombardi Community Engaged Framework COMMUNITY Georgetown- Lombardi Office of Minority Health and Health Disparities Research Georgetown- Lombardi Capital Breast Cancer Center Outcomes Equitable Partnership Building Research Capacity Trust Education and Training Prevention/Cancer Control Recruitment and Retention Community Outreach/Engagement Employment of Community Members

Qualitative Recruitment and Retention Evaluation Metrics 1. What recruitment strategies were used to enroll participants in the study? 2. What recruitment strategies were the most effective? 3. What were some of the barriers you encountered during the recruitment process? 4. What strategies were used to reduce these barriers? 5. What were some of the reasons participants dropped out of the study? 6. What retention strategies were used to keep participants enrolled in the study? 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

12/26/2017 Journal Articles

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 patients, family members, providers, and the community to create better public value for the contribution of participation in clinical trials?