Evolving Patient Stakeholder Engagement in Invested in Diabetes

RAMONA KORENI
University of Colorado Anschutz Medical Campus

Patient engagement in healthcare research may be beneficial to enhancing research studies in enhancing research feasibility, acceptability, rigor and relevance. The active collaboration between patients and researchers can inform the full spectrum of research activities (planning study design, selecting relevant outcomes, tailoring interventions to meet patient needs and preferences, enhancing patient study enrollment, study implementation/conduct, analyses review, and dissemination). Specifically, actively engaged patient participation in these various research activities throughout the research project lifecycle can produce interventions that align more with patient needs and are more acceptable by patients thus leading to greater patient uptake and engagement and potentially greater improvement in intervention outcomes.
 
The Invested in Diabetes project, a comparative effectiveness cluster-randomized pragmatic trial comparing two methods of implementing diabetes shared medical appointments, engaged patient partners from conception through implementation and continues to engage patients as findings begin to be disseminated. This presentation will describe the experience of the patient-researcher partnership and how engagement evolved throughout the course of the project.

The study takes place in primary care practices in Colorado and Kansas. The views represent Colorado-based patient stakeholders and University of Colorado researchers.

Five stakeholders and four researchers responded to questions around their perception of patient stakeholder involvement. Project notes and deliverables were looked at to examine the change in engagement over time.

Stakeholders entered the project at different times and had different motivations for participation. Engagement and expectations changed significantly for stakeholders as the project went from concept to implementation, with stakeholders moving from an advisory role to assisting in project deliverables and otherwise becoming part of the study team as patient partners. Stakeholders responsibilities included finalizing study outcomes of interest, developing training and onboarding materials for peer mentors, co-leading peer mentor learning collaborative calls, and reviewing patient-facing materials for practices. Changes in interaction between the stakeholders and researchers naturally occurred as well, as will be discussed.

Patient stakeholders played a critical role in the Invested in Diabetes project. The prolonged engagement resulted in a stakeholder advisory role that transformed in response to the changing needs of the project over time. Projects utilizing patient stakeholders should consider how to best engage them based on their project needs,and should expect to re-evaluate the relationship over time.