Engagement to Identify Health Priorities of People With Intellectual and/or Developmental Disability.

Area of Science:

• Health Services Research
• Patient and Community Engagement
• Disability Studies

Background:

• Exclusion of individuals with lived experiences from health research and policy development is a significant barrier.
• Effective engagement strategies are needed to ensure diverse perspectives inform health priorities.

Purpose of the Study:

• To describe and demonstrate how high-quality engagement supports partner and project outcomes.
• To identify health priorities for people with intellectual and/or developmental disabilities (IDD) and their support networks.

Main Methods:

• Implemented and evaluated engagement methods with IDD self-advocates, caregivers, clinicians, payers/regulators, and researchers.
• Utilized a variety of engagement approaches, with a focus on graphic illustration and visual engagement.

Main Results:

• Productive conversations advanced priority areas through visual engagement methods.
• Partners reported satisfaction and continued participation throughout the 2-year project.
• Identified nine illustrated priority health outcomes relevant for research, practice, and policy.

Conclusions:

• The engagement and priority-setting approach yielded compelling findings for partners.
• High-quality engagement is effective in identifying health priorities and supporting project outcomes.
• Visual engagement methods are valuable for productive dialogue in health research and policy development.