Measuring Outcomes for Community Partner Engagement: The Case of the High-Fidelity Wraparound Program for Pediatric Type 1 Diabetes.

Abstract

Objective: The purpose of this article is to describe the processes for convening and engaging an advisory board to guide the conduct of a research study of the Type 1 Diabetes Wraparound Program (T1DWP) and associated outcomes.

Research design and methods: We recruited a diverse advisory board (n = 21) consisting of youth with type 1 diabetes, parents/advocates, and health system partners. The board met monthly over 2 years to discuss all phases of the T1DWP study. We evaluated aspects of engagement and satisfaction among advisory board members using a monthly experience survey on a five-point Likert scale (ranging from strongly disagree to strongly agree) and outcomes, including modifications to the research materials, the study protocol, and implementation.

Results: We received 10 ± 3 survey responses per meeting, with representation from every role at each meeting. The overall stakeholder satisfaction score increased from 4.5 at baseline to 5.0 at month 6 and was maintained at 5.0 at month 24 as the research team responded to feedback. Average scores for specific processes of engagement were high: expectation setting (4.6 ± 0.3), co-learning (4.6 ± 0.3), transparency (4.6 ± 0.3), and decision-making (4.7 ± 0.2). Changes to the T1DWP study resulting from advisory board input included adding nine additional patient-reported measures and specific diabetes resources and programming. Furthermore, the board contributed to hiring of T1DWP study staff, fundraising activities, and clinical integration of the T1DWP, demonstrating stakeholder empowerment and knowledge translation to the clinical setting.

Conclusion: Our processes led to several meaningful contributions to the research study. This experience illustrates the willingness and importance of partnering with stakeholders to help shape resources and programs in pediatric diabetes intervention research.