Background: Significant disparities in health outcomes have been observed for Arab Americans. There are currently no national patient engagement structures in research for the Arab American community and no way to understand the needs, voices, and experiences of this group. Further, there are no guidelines for how to best recruit, retain, and partner with Arab American patients when conducting PCOR/CER.
Proposed Solution to the Problem: To build the infrastructure for AAHNA (Advancing Arab American Health Network Alliance), a national community of stakeholders, including patients, clinicians, researchers, and community organizations that are dedicated to improving patient-centered outcomes among Arab Americans. Through AAHNA, Arab American patients will contribute to the development of priorities and a research engagement guide for future CER.
- To create a sustainable community of stakeholders called AAHNA: including patients, caregivers, clinicians, and researchers to facilitate PCOR/CER serving Arab American communities.
- To develop priorities in Arab American health research that include input from Arab American patients.
- To develop patient-centered research priorities and a research engagement guide that respect the unique sociopolitical and cultural needs of Arab American patients.
Activities: The main project activities include: Steering Group meetings, a training and priority setting meeting, social media campaign, a patient engagement survey, and the AAHNA Conference. A social media campaign will gain perspectives from Arab Americans on appropriate research engagement. Stakeholders will engage in conversations around prioritization and development of a research engagement guide during the conference taking place as part of the Arab Health Summit.
Projected Outcomes and Outputs: The outputs for this project include the development of a) a community of patients, clinicians, researchers and community groups (AAHNA) focused on establishing trust and understanding with this patient population, b) research priorities developed with input from patient and community members, and c) a research engagement guide informed by Arab American patients. In the medium –term, after the project period, the team’s goal is to continue meeting with AAHNA while conducting PCOR/CER projects to report back on findings and get feedback on next steps. In the long term, the hope is that this work will lead to PCOR/CER programs serving Arab Americans and grants and centers to address the needs of this vulnerable population.
Patient and Stakeholder Engagement Plan: Collaboration with patients, researchers, clinicians, and community health organizations has occurred throughout the development of the proposal. The project will bring together all stakeholders for opportunities to develop meaningful collaborations. The main objective of this project is to engage Arab American patients in the development of research priorities and creation of a research engagement guide that facilitate future PCOR/CER research.
Project Collaborators: Collaborating institutions include Boston College, the Arab Community Center for Economic and Social Services (ACCESS), the Arab American Family Support Center (AAFSC), and Somali Family Services of San Diego. Collaborating professional organizations include the National Arab American Medical Association (NAAMA) and the American Arab, Middle Eastern, and North African Psychology Association (AMENA-Psy).