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

Area of Science:

• Pediatric Endocrinology
• Health Services Research
• Patient and Family Engagement

Background:

• Effective research requires robust stakeholder engagement.
• Advisory boards can provide critical guidance in intervention studies.
• Type 1 Diabetes Wraparound Program (T1DWP) aimed to improve care for pediatric patients.

Purpose of the Study:

• To describe the processes for convening and engaging an advisory board for the T1DWP study.
• To guide the conduct of the T1DWP research and associated outcomes.
• To evaluate the impact of stakeholder input on the research.

Main Methods:

• Recruited a diverse advisory board (n=21) including youth with type 1 diabetes, parents, and health system partners.
• Conducted monthly meetings over 2 years to discuss all study phases.
• Evaluated engagement and satisfaction via monthly surveys and tracked study modifications.

Main Results:

• High stakeholder satisfaction (5.0/5.0) maintained throughout the study.
• Positive scores for expectation setting, co-learning, transparency, and decision-making.
• Advisory board input led to added patient-reported measures, resources, programming, staff hiring, fundraising, and clinical integration.

Conclusions:

• Advisory board engagement yielded meaningful contributions to the T1DWP research.
• Stakeholder partnerships are crucial for shaping pediatric diabetes intervention research.
• This model demonstrates successful knowledge translation and stakeholder empowerment.