Optimizing Patient-Partner Engagement and Integration in Research: Recommendations From a Qualitative Study of Focus Groups With Patient-Partners Living With Type 1 or Type 2 Diabetes

OBJECTIVES: Diabetes is a global health emergency, affecting more than 420 million people worldwide, but care gaps persist. Patient engagement (PE) in research may address these gaps, but meaningful engagement with representative populations of diverse race, language, and socioeconomic status is lacking. Power imbalances and tokenistic engagement are common. Our aim in this study was to understand what diverse patient-partners (PPs) who live with diabetes need to participate in research and how to integrate and engage them meaningfully. METHODS: A purposive sampling strategy was used to recruit PPs from the Diabetes Action Canada (DAC) research network. A semistructured focus group guide was used to conduct focus group sessions. Sessions were audio-recorded and transcribed verbatim. Data analysis and synthesis involved Braun and Clarke's reflexive thematic analysis to develop patterned meanings across the data set. RESULTS: Thirty-five PPs participated in 13 focus groups (9 English, 4 French). PPs had a mean age of 55 years, were living with type 2 (46%) or type 1 (37%) diabetes, identified as female/woman (77%), and resided in Ontario (47%) or Québec (40%); 34% identified as racialized. Themes were developed across 3 broad domains: 1) enablers; 2) opportunities for improvement (challenges and recommendations); and 3) diabetes-specific considerations, highlighting distinct challenges and enablers related to participants' lived experiences with diabetes. We used these data to codesign research-stage-specific recommendations to optimize patient integration and engagement in research. CONCLUSIONS: Our focus group study identified enablers and opportunities for improvement to integrate PP perspectives into the DAC research network more meaningfully.