Community Engagement Recruitment & Retention Studio

Community Engagement Recruitment & Retention Studio

Overview and Purpose:

The CTSI Community Engagement Recruitment and Retention Studio embodies a key component of the CTSI Mutually Learning Tri-lateral Ecosystem i.e., (research enterprise, community, healthcare enterprise). Of note, the Studio also characterizes the CTSI core principle of Diversity, Equity, Inclusion and Access (DEI&A) towards advancing the health of our community through research and discovery; thus, optimizing the participation of underrepresented and underserved minority populations in the translational research process.

Multidisciplinary researchers are provided opportunities to consult with patients, community members, health care providers, population health experts or other key stakeholders via a panel of such representatives who provide feedback towards development of strategies that enhance the planning, design, implementation, translation or dissemination of research, at the onset and throughout every phase of the translational research process. (https://ncats.nih.gov/files/ctsa_program_factsheet.pdf)

The CTSI Council of Faiths (i.e., church leaders across denominations) will also be leveraged to optimize the outcomes, impact, and sustainability of the Studio.

Additional Key Functions

• Serves as a comprehensive resource ‘end-to-end’ for clinical and translational investigators and study teams to facilitate high-impact research
• Function in the capacity of a local recruitment and retention studio for NIH NCATS CTSA Program Trial Innovation Network which brings together research institutions in the CTSA national consortium of 63 Hubs at 50+ academic medical centers across the country. (supporting multi-institutional research and CTSA-supported trials) (https://ncats.nih.gov/ctsa/projects/network)
• Provides opportunities to liaison with ResearchMatch.org (https://www.researchmatch.org/; https://ctsi.mcw.edu/blog/news-events/news/national-news/researchmatch-brings-volunteers-trying-to-find-clinical-trials-together-with-researchers/)
• Publicizing your Clinical Trials and How to Find Eligible Participants
  • Learn how to register your trial on ClinicalTrials.gov
  • Learn about finding eligible participants with Research Match
  • Connect with CTSI Informatics Core to learn about:
    • a) Clinical Research Data Warehouse for consultation on how to use the i2b2 eligible patient Cohort Discovery Tool
    • b) how to access a national network of research centers to generate aggregate patient count data via the real-time platform Accrual to Clinical Trials Network (ACT Network)
    • c) TriNetX query networks (Query TriNetX) and more

OVERALL BENEFITS TO RESEARCH INVESTIGATORS: HIGHLIGHTS

It is critical that research is patient/community-centered, lay-friendly, equitable, and feasible. Our consultations ensure that these topics are addressed. Benefits to investigators include:

• Build community trust and meaningful relationships
• Strategic engagement, recruitment, and retention planning that incorporates health equity and diversity as foundational principles
• Community benefit, value, and role is recognized by the research and healthcare enterprise
• Direct access to CTSI community-engaged research experts and stakeholders from various settings, without the complexity of scheduling multiple meetings
• Identify and build relationships with community partners
• Identify potential patient or community partners to enhance research development, conduct, implementation, and dissemination
• Address current and potential recruitment and retention roadblocks and challenges
• Assessment of feasibility and appropriateness or ethical perspective of the research project for patients or various community populations (e.g., underrepresented or underserved populations)
• Enhance participation of hard-to-reach populations
• Social marketing and communications planning
• Direct input or feedback on cultural and linguistic appropriateness/literacy level of research documents (e.g., recruitment materials, consent documents, surveys, web content, etc.)
• Collaborate on strategies to disseminate research results in community settings
• Effective protocol design and development options (minimizing the burdens of participation with a feasible schedule of events and eligibility criteria)

BENEFITS TO COMMUNITY:

The CTSI Recruitment and Retention Studio not only benefits research investigators and their teams but also allows community members to participate as equal partners in the Mutually Learning Tri-lateral Ecosystem (research enterprise, community, healthcare system). Community benefits include:

• Increase community trust  and understanding of clinical and translational research(C&TR)
• Increase community ownership and empowerment in C&TR
• Community ability to enhance or positively impact the C&TR research process
• Community health benefit, value, role and responsibility are recognized by the research and healthcare enterprise
• The ‘voice’ of the community is heard and at the forefront and throughout the C&TR research process
• Diversity, Equity, Inclusion & Access—participation in C&TR
• Opportunities for community to initiate C&TR