From Participants to Partners: Elevating Youth and Family Voices in Health Research

This methods-focused article advocates for a paradigm shift in pediatric research by engaging youth, emerging adults, and families as full partners across all stages of the research process-from design and data collection to authorship and dissemination. Rooted in the "Nothing About Us, Without Us" ethos and aligned with the Patient-Centered Outcomes Research Institute framework, this model promotes authentic, sustained engagement with those most affected. Developmentally attuned, co-produced inquiry reframes youth and families not as passive participants, but as knowledge contributors whose lived experience drives relevance, ethics, and impact. This approach embeds equity, co-learning, and shared decision-making throughout pediatric research. Practical guidance is offered for ethically engaging communities, co-designing studies, navigating human subjects' protection and authorship considerations, and using participatory methods. By centering lived experience from the outset, this framework produces findings that are more actionable and inclusive, advancing Patient-Centered Outcomes Research Institute's national mission to generate meaningful, patient-centered clinical effectiveness research.