Community case study of patient and clinician early engagement in research on multiple chronic conditions using an...

This case study describes the CIRCLE (Collaboratively Inspired Research Community for Learning and Engagement) project, which aimed to advance meaningful community engagement in research about multiple chronic conditions (MCCs) by co-creating a research agenda with patients, caregivers, clinicians, and researchers. The project was conducted entirely virtually, utilizing a structured process with engagement tools adapted from a prior Patient Partner Guide. It included three stages: (1) develop the virtual environment and adapt the engagement process and tools, (2) recruit and train co-creators and facilitators to test the process and tools collaboratively and make iterative improvements, and (3) implement these tools in ten-week group sessions. Project participants in the group sessions - adults with or caring for individuals with MCCs - were recruited from a previous national trial. They engaged in interactive activities such as needs assessments related to engagement, Affinity Diagrams, and Shared Lived Experiences. Results demonstrated success in two domains: (1) successful engagement in early stages of collaborative research as measured by recruitment (59 initial participants) and high levels of retention (89%) and participation (100% completion of initial assessment; 78-82% of other assessments and activities; positive qualitative evaluations) and (2) successful completion of a Partnering Guide for Research (PGR) and a prioritized research agenda for MCCs. The project is a demonstration of intentional, structured virtual engagement processes and supportive environments fostering equitable partnerships and trust while producing intended products. The PGR is a replicable implementation guide to be used by other teams seeking to integrate community voices into health research starting with a research agenda.