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

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 o...

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Bibliographic Details
Published in:Western journal of nursing research 2021-10, Vol.43 (10), p.924-929
Main Authors: Faulds, Eileen R., Lewis, Claudia, Dungan, Kathleen M., Happ, Mary Beth
Format: Article
Language:English
Subjects:
Advocacy
Collaboration
Consultants
Diabetes
Diabetes Mellitus - therapy
Humans
Patient communication
Patient Participation
Patients
Research Design
Research Subjects
Researchers
Selfmanagement
Teams
Telemedicine
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Summary: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.
ISSN:0193-9459
1552-8456
DOI:10.1177/0193945921992012