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

People with lived experiences are often excluded from development of solutions and decision-making related to health research and policy. To describe and demonstrate how high-quality engagement supports partner and project outcomes. The ultimate project outcome was to identify health priorities desired by people with intellectual and/or developmental disability (IDD) and the people who support achieving those priorities, including caregivers, clinicians, and payers/regulators. This capacity-building project implemented and evaluated methods of engagement of IDD self-advocates, caregivers/partners, clinicians, payers/regulators, and researchers. Our reliance on a variety of engagement approaches, but particularly graphic illustration and other visual engagement, yielded productive conversations to advance areas of priority. Partners felt satisfied with engagement and continued to participate at multiple points throughout the 2-year project. We identified nine illustrated priority health outcomes useful for research, practice, and policy change. Our engagement and priority-setting approach resulted in findings that partners found compelling personally and professionally.