This project addresses knowledge gaps that hinder community-based research to ameliorate American Muslim health disparities. The lack of national forums focused on this community’s health combined with scattered local research projects leads to Muslim Americans being overlooked in health disparity-focused community-based research programs. Consequently, there are few opportunities for community leaders to develop the skills and networks for community-relevant PCOR.
In order to address these deficiencies, the project aims to:
- Develop a diverse cohort of Muslim community leaders equipped with the requisite knowledge, skills, and networks to effectively engage in community-relevant patient-centered outcomes research
- Convene a multidisciplinary conference that brings together clinicians, researchers, religious leaders, social service providers, funders, and other stakeholders to discuss PCOR approaches to combating Muslim health disparities
- Develop a white paper outlining best practices and a list of community health issues amenable to mosque-based PCOR
In order to meet these aims, the project entails three major activities: a learning institute (at UMMA Clinic in Los Angeles); a webinar and online discussion series (hosted by Whitestone Foundation); and a multidisciplinary conference (at University of Chicago). Specifically, the project team will engage 15 leaders working in different sectors within the Muslim community in a longitudinal, tailored curriculum delivered in part at the learning institute. Researchers will also host a multi-stakeholder conference at the University of Chicago where patient advocates, policy makers, payors, and funders help to outline best practices and deliberate over health issues most amenable to PCOR. Interspersed within and complementary to these activities will be online surveys and facilitated discussion-based assessments of the community leader cohort’s knowledge, resources, and intent to engage in PCOR. Through these activities, we will ascertain, understand, and disseminate the community health-relevance of their cohort’s work and equip these leaders with the necessary knowledge, skill sets, and networks for community-based, patient-centered outcomes research. Furthermore, the cohort will generate a white paper that provides a roadmap for Muslim community PCOR and articles summarizing project learning. In the broadest sense, the overall outcome of this project will be that the Muslim-American community will be poised to participate in PCOR and to tackle pressing community health issues.
The project builds upon existing relationships among, and the particular expertise of, four organizations: the Initiative on Islam and Medicine (II&M) representing a research perspective, UMMA representing a community health clinic voice, Worry Free Community (WFC) representing the patient perspective, and Whitestone Foundation (WF) lending a broader Muslim community voice. Representatives from these groups form the project’s steering committee, which will meet monthly, select the community leader cohort, and design all project activities collaboratively.
II&M has primary responsibility for the conference, UMMA for the learning institute, WFC for the white paper and articles, and WF for the online forum. The community leader cohort will be drawn from social service professionals, religious leaders, researchers, and patients within the Muslim community and will engage in co-learning, set the online webinar and conference agenda, and co-write the white paper over the course of two in-person and 12 virtual meetings.