1. 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

2. 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

3. 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.

4. 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

5. 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.)

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. 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: /cts.12285

8. 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: /cts.12285

9. 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

10. Qualitative Recruitment and Retention Evaluation Metrics1.
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: /cts.12285

11. 12/26/2017
Journal Articles

12. 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?