Establishing a Patient-Led African Immigrant Health Research Consortium

African immigrants are among the fastest growing immigrant groups and are a rapidly growing segment of the black community. For this population, studies have shown disparities in health outcomes for mental health, chronic diseases, and infectious diseases. For a variety of reasons—culture, literacy, language, barriers to effective patient-provider communication, discrimination—African immigrants face challenges in accessing and utilizing health services, and making decisions about clinical care. Addressing disparities in clinical outcomes for African immigrants is needed. Many evidence-based clinical approaches are based on research that did not include African immigrant patients or incorporate their needs and circumstances into the research process. This gap is also evident in patient-centered outcomes research and comparative clinical effectiveness research (PCOR/CER). To date, African immigrants are not intentionally included in PCOR/CER efforts. This limits the opportunity to implement research that addresses questions important to African immigrant patients and other stakeholders, and it limits the dissemination of study outcomes that are meaningful to African immigrant patients and the generalizability of PCOR/CER findings.

The project will provide a solution by increasing patient engagement and equitable partnerships in research for African immigrant patients, caregivers, and organizations, and fostering a sustainable patient-driven research network focused on implementing PCOR/CER to address disparities in African immigrant health outcomes. A key focus is to build the research capacity of African immigrant community members and organizations so that they are prepared for collaborative work with academic researchers, and empowered to utilize PCOR and CER methods to address health disparities in their communities. It develops a model to ensure African immigrant patients are engaged in the PCOR/CER research process and also lays a foundation for best practices in PCOR/CER engagement for immigrant populations. Therefore, outcomes of this project will have a national reach and can be tailored to other immigrant populations.

Objectives are to:

• Gain an understanding of barriers, facilitators, and motivators to engaging African immigrant patients, caregivers, and organizations that represent them in PCOR/CER.
• Determine and prioritize the research interests and chronic disease concerns of African immigrant patients, which can be addressed through PCOR/CER.
• Develop a three-year research agenda based on the prioritized chronic diseases, community assets, and research gaps.
• Disseminate lessons learned, tools, and outcomes to patient, provider, academic, and other networks locally, regionally, and nationally.

The project team will hold community forums and staff interviews to gain an understanding of barriers, facilitators, and motivators in engaging African immigrant community members and organizations in research. The team will prioritize the research interests and chronic disease concerns voiced by patients and stakeholders through virtual focus groups. Information collected will be used as part of a think tank to generate CER ideas. Findings from the think tank will inform a three-year research plan that is responsive to patient needs. Led by Community-Campus Partnerships for Health (CCPH) Immigrant Health Workgroup, the team will engage a national network to advise on the project, disseminate findings, and inform the application of findings to other immigrant populations.

Three of the seven leadership team members are patient representatives; thus, they have personal and firsthand knowledge of patients’ needs and experiences. Two partner organizations are leading African immigrant patient advocacy organizations in their state—Africans For Improved Access (AFIA) in Massachusetts and African Alliance of Rhode Island (AARI).

The team will further engage patients and stakeholders by: holding a community forum in each state; gaining feedback through interviews from staff at organizations that represent patients; holding two virtual focus groups to prioritize the research interests and chronic disease concerns; and convening a think tank with patients and stakeholders.

Products include: a manuscript documenting the barriers, facilitators, and motivators influencing African immigrant community members and organizations engaging in research; toolkit outlining lessons learned and best practices; a patient-centered research agenda; and a sustainable research infrastructure and partnerships to implement PCOR/CER projects and disseminate PCORI-funded research results.

The leadership team consists of the Multicultural AIDS Coalition – Africans For Improved Access (AFIA) program, Office of Maine Refugee Services, New Hampshire Office of Health Equity, African Alliance of Rhode Island, University of Vermont Larner College of Medicine, and Community-Campus Partnerships for Health.