Project Summary
Background: African immigrants are often deemed as a hard to reach population due to social, cultural, and systemic barriers. Vital to engaging this populations is supporting the trusted sources that have the cultural knowledge, skills, and expertise to break down barriers. African immigrants tend to form close-knit, ethnic enclaves consisting of faith and civic organizations founded by earlier immigrants to help members of their communities find support. These truly grassroots entities are often the only agents that African immigrants trust and utilize regularly, putting them in a unique position to be community partners and serve as a resource for disseminating accurate research information.
Proposed Solution to the Problem: This project will aim to implement a peer-to-peer culturally based capacity-building approach that fosters and sustains a national infrastructure for organizations indigenous to the African immigrant community to engage meaningfully in the patient-centered outcomes research (PCOR) enterprise and lead PCOR/comparative clinical effectiveness research (CER) partnerships.
Objectives:
- Build the capacity of organizations representing or providing direct services to African immigrants to meaningfully participate in PCOR/CER
- Introduce relevant PCOR/CER findings to organizations focused on addressing disparities in health outcomes among African immigrant patients
- Match patient-led organizations with researchers and other entities interested in similar PCOR/CER ideas related to African immigrant health
- Establish a national learning community to support partnership development, patient engagement, and the application of PCOR/CER methodology
Activities: The project team will use YR1 to train African-led and African-serving organizations through implementing regional convenings. YR2 will include a national convening and monthly follow-up sessions.
Projected Outcomes and Outputs
Short-term outcomes during the project period include establishing a trained cohort of at least 40 African-led and African-serving organizations across the United States. The goal is to support organizations in expanding their work to include PCOR/CER. They will be well positioned to be a part of the PCOR enterprise as patient partners, advisors, investigators, and advocates.
Medium-term outcomes (zero to two years post project period) include newly formed partnerships that will engage in eight monthly sessions to support partnership development and research ideas for PCORI funding or other funding supporting PCOR/CER. The project will develop a culturally based, peer-to-peer capacity-building model for African-led and African-serving organizations. Products developed can be adapted for diverse immigrant populations and PCOR/CER partnership structures.
Long-term outcomes (three and more years post project period) include a national patient-led research infrastructure that advances the portfolio and impact of PCOR/CER for African immigrant health.
Patient and Stakeholder Engagement Plan: The project team will engage African-led and African-serving community organizations. Patient partners from both projects have been involved in the planning and will lead implementation.
Project Collaborators: This project’s partnership is led by six patient advocacy organizations, an academic institution, and two state refugee health departments.