Building Capacity for PCOR in Refugee Communities

Background: Refugee families face higher burden of disease and compromised access to healthcare. To address these risks, it is important for refugee community members to participate in research development to improve healthcare access and outcomes.

Motivation: The project team will engage a comprehensive group of refugee patients and stakeholders (clinicians, researchers, community partner organizations and community members) to identify shared patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) priorities for refugee health. The team will generate a research agenda for refugee health PCOR/CER and promote engagement of refugee families. The project will be led by Elena’s Light and involve clinicians and researchers at Yale and members of the local refugee community.

Goal: The goal of this proposal is to build capacity for PCOR/CER within the refugee community of greater New Haven. 

Objectives: 

1. Establish a collaborative, informed, committed group of stakeholders and build their PCOR/CER capacity.
2. Identify shared research priorities.
3. Establish engagement strategies.

Activities: The team will establish a collaborative group of patients and stakeholders impacted by refugee health who will be trained in PCOR/CER and will synthesize a research agenda to guide PCOR/CER and engagement strategies in refugee health.

Deliverables: 

1. Toolkit with strategies for engaging with refugee families as partners in PCOR/CER
2. Publishable PCOR/CER agenda with stakeholder identified priorities for refugee health
3. Submission to a peer-reviewed journal summarizing engagement processes for refugee families as stakeholders in PCOR/CER
4. PCOR/CER engagement roadmap

Projected Outcomes and Outputs:
Short-term outcomes during the project period:

1. Develop a publishable PCOR/CER agenda.
2. Develop a toolkit that describes strategies for engaging refugee families.
3. Submit a report to a peer-reviewed journal.

Medium-term outcomes (0-2 years post-project period):

1. Establish infrastructure for engaging/disseminating research findings to community and academic audiences. 
2. Broadly disseminate resources to support engagement of refugee families in PCOR/CER for local and national use.
3. Identify funding opportunities to address patient/stakeholder PCOR/CER priorities and submit a proposal. 

Long-term outcomes (3+ years post-project period): 

1. Establish a center of excellence comprised of engaged, knowledgeable stakeholders in refugee health PCOR/CER.
2. Integrate and disseminate PCOR/CER findings in refugee health care.
3. Submit funding applications to funders to address stakeholder-identified PCOR/CER priorities in refugee health. 

Patient and Stakeholder Engagement Plan: Patients and stakeholders will meet regularly to discuss PCOR/CER priorities in refugee health research and stakeholders’ ongoing efforts, engage in joint dialogue and provide iterative feedback to improve engagement. Reciprocal partnerships, integrity, trust, transparency and collaboration will be established between all stakeholders.

Evaluation: The PCORI Engagement Award Evaluation Reporting Tool will be used to evaluate reach, engagement in PCOR/CER, resource creation, adoption and implementation. Reach will be evaluated through individual, stakeholder, researcher and patient involvement. 

Project Collaborators: 

1. Yale clinicians and researchers assisting in design, implementation and dissemination.
2. Integrated Refugee and Immigrant Services, a refugee resettlement organization sharing its longstanding experiences/strategies in engaging the refugee community.
3. An evaluator from Urban Policy Strategies ensuring adoption and implementation.