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Community health centers (CHCs) and those most burdened by disease are important partners in setting research agendas to address the needs of people who are medically underserved.
Objectives:
Identify and prioritize health equity-focused research priorities using a collaborative approach to community engagement of key informants.
Methods:
We used five stepwise phases from January 2021 to February 2023 to formulate and prioritize a set of health equity-focused research topics among CHC staff (leaders, clinicians), their key advisors (patients and community members), and researchers from academic medical centers in California. Phases included: (1) community advisory board formation, (2) key informant identification, (3) individual/small group interview guide development and administration, (4) initial health equity-focused topic categorization, and (5) in-person meeting with community advisors for final topic prioritization using nominal group technique.
Results:
Twenty individual or small group interviews were completed with 44 diverse participants, along with engagement from our community advisory board, which resulted in an initial list of 11 health equity-focused research topics. Ninety advisors including diverse community members, CHC staff/leaders, and researchers prioritized six overarching research topics. Final prioritized health-equity focused research topics include addressing mental health challenges, improving public’s trust in healthcare and science, healthcare delivery models to increase access and utilization, build and sustain an anti-racist healthcare system, strategies and interventions to address health misinformation, and continuing and sustaining polices based on lessons learned from COVID-19.
Conclusions:
Results offer future direction for community-engaged research agendas to advance health equity among medically underserved and vulnerable patient populations.
We created a COVID-19 Research Patient and Community Advisory Board (PCAB) to provide patient and community input into clinical and translational research studies. The purpose of this article is to describe the PCAB creation, implementation, and evaluation.
Methods:
We identified PCAB members who had participated in previous stakeholder engaged activities at our institution and invited their participation. We created a systematic consultation process where researchers could submit plain language research summaries and questions for the PCAB. A facilitated 1-hour virtual consultation was then held where PCAB members provided feedback. We assessed satisfaction of PCAB members and researchers who received consultations using surveys. We also reviewed video recordings of PCAB consultations and reflections from team meetings to identify key lessons learned.
Results:
Twenty-seven PCAB members took part in 23 consultation sessions. Twenty-two completed an evaluation survey (81% response rate). Most members agreed or strongly agreed their opinions were valued (86%), it was a productive use of time (86%) and were satisfied (86%). Nineteen researchers completed an evaluation survey (83% response rate). Researchers reported positive experiences of working with the PCAB. Additional insights include limited funding in COVID-19 research for equitable community engagement, deficiencies in researcher communication skills, and a lack of cultural humility incorporated into study activities.
Conclusions:
PCAB members provided recommendations that maximized the patient-centeredness and health equity focus of COVID-19 research. The detailed description of the process of developing, implementing, and evaluating our PCAB can be used as a template for others wishing to replicate this engagement model.
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