From Consultant to Co-investigator: One Diabetes Research Team’s Journey of Patient Engagement

Abstract

Patients with diabetes are experts in the lived experience of self-management, making patient engagement beyond the role of research “subject” imperative for the creation of health care solutions that meaningfully address the problems they identify. We discuss our research team’s relationship with our university’s College Diabetes Network (CDN), an advocacy and support group for emerging adults with diabetes. Our collaborative research relationship has spanned three years, and multiple research studies with members serving as co-designers, consultants, and co-investigators. We discuss the CDN’s role in two particular studies in which CDN members made substantive contributions to study design, instrument adaptation, and interpretation of findings. Key CDN members played a larger role in research activities and facilitated sustained engagement with the larger university CDN chapter. Barriers encountered included navigating research regulatory requirements while engaging CDN members in research and facilitating sustained engagement as CDN membership changes.