Regulatory Science Symposium: “Keys to a Clinical Trial: Management and Operations” Session 6 - A Community Engaged Approach to Recruitment, Enrollment, and Retention of Underrepresented Populations (2024)

Competencies: Representation, Clinical Trials, Community Engagement, Vulnerable Populations, Regulatory and Quality Sciences, Regulatory Science, Ethical Considerations

Course Syllabus/Topics:

1. Introduction to Work: SC CTSI Community Engagement Core
1. Bridge between the community and academia
2. Work in the communities of South, Central, Eastside of LA
3. Scope of Work
1. Understanding health issues important to communities, developing relationships, addressing areas of misinformation
2. Community based participatory research
1. An approach to community engaged research
2. Rooted in equitable partnership
3. Research participants as partners
4. Researchers working in tandem with members of the population to help develop and conduct the research
3. Community engagement
1. Definition
2. Involves partnerships and coalitions
3. Partners can be groups, organizations, individuals, institutions
4. Can lead to longer term partnerships that can advance research
1. Can be achieved through time-limited project
4. Questions to ask
1. At the start or during a research project, important to ask:
1. Why are you doing this research?
2. What is driving this research?
3. Why is this research important to you, the community, or both?
4. Who are the potential partners in this research?
5. How can participants be partners?
6. Where is this work situated?
5. Understanding Underrepresented Populations
1. Understand
1. Your participant population
2. Why mistrust exists
3. Why underrepresented populations are hard to reach
4. The history of your participant population
2. Develop effective strategies
1. For engagement
2. Recruitment and enrollment
3. Retention
6. Engaging Underrepresented Populations
1. Building trust
2. Understanding different populations
1. Meeting people where they are
3. Understand needs and preferences
1. Age
2. Literacy levels
1. Use plain language
3. Language barriers
1. Use language that literally and colloquially translates
4. Preferred communication methods
4. Intentional composition of research teams
1. Bilingual study team
7. Community Advisory Board
1. Receive input and feedback from community of focus, through all stages of the project.
2. May include people from organizations or from the intended study population who can provide guidance for recruitment, retention and outreach.
8. Recruitment and enrollment
1. DON’T
1. Rely on one recruitment method
2. Rely on Google Translate (enlist community partners)
3. Rely on community partners to do the work for you
4. Expect people to come to you
2. DO
1. Build trust in your participant populations
2. Go into the community and engage
3. Know your participant population
4. Think about composition of research teams
1. Representative
2. Culturally competent
5. Speak the language of desired participant population
6. Engage with community
7. Be proactive
8. Be flexible
9. Have study material that is language-specific
10. Convene an advisory board
3. Retention
1. Understanding how people want to be contacted
2. Collect a variety of contact information
3. Staying in touch
1. Monthly check-ins (automated via survey platform, incentivizing contact info updates)
2. At risk for loss outreach (different research associate attempts, try various forms of contact methods)
4. Flexibility
1. Lessons learned from COVID Pandemic
5. Compensation and resources
1. Considerations: appropriate amount, increasing accordingly, type of compensation, transportation assistance, community referrals (resources or services), snacks
6. Disseminating findings
1. Ensuring participants know what their data is contributing to
2. Sharing findings with the community
3. Using plain language to share findings
4. Maintain trust and continues relationship
7. Conclusion
1. Community engaged approach sets the tone for the research project
2. Build trust with the community you intend to involve in your study
3. Create partnerships
4. Intentional and representative research teams
5. Culturally tailored and language appropriate material
6. Dissemination of findings with study participants
8. Questions and answers
9. Thank you!
   

Acknowledgements
Accompanying text created by:
Roxy Terteryan, Project Administrator, SC CTSI (atertery@usc.edu)
Rushaanaaz Sokeechand, Student Worker