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

Abstract

Background: 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.

Objective: To understand what diverse patient partners (PPs) who live with diabetes need to participate in research and how to integrate and engage them meaningfully.

Design: Qualitative study of focus groups.

Methods: A purposive sampling strategy was used to recruit PPs from the Diabetes Action Canada (DAC) research network. A semi-structured focus group guide was used to conduct focus group sessions. Sessions were audio-recorded and transcribed verbatim. Data analysis and synthesis involved Braun and Clark's reflexive thematic analysis to develop patterned meanings across the dataset.

Results: 35 PPs participated in 13 focus groups (9 English, 4 French). PPs had a mean age of 55 years, living with type 2 (46%) or type 1 (37%) diabetes, identified as female/woman (77%), residing in Ontario (47%) or Quebec (40%); 34% identified as racialized. Themes were developed across three 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 this data to co-design 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.

Keywords: Diabetes; Focus groups; Patient engagement; Patient integration; Patient partner; Patient-oriented research.