Amplifying adolescent and emerging adult voices: Development of a pediatric-to-adult transition research advisory council

Abstract

Background: Adolescents and emerging adults (AEA) with chronic health conditions may face numerous challenges when undergoing the transition from pediatric to adult health care. Despite the need for engagement with AEA in health research, little is known about how researchers operationalize this engagement. In an effort to enhance transparency in the practices of patient engagement, this commentary details the process of developing a pediatric-adult transition-specific youth advisory council in Alberta: the Transition Research Advisory Council (TRAC). Objectives: We provide an overview of AEA engagement in health research and detail TRAC’s recruitment and onboarding strategies. Moreover, TRAC members provided reflections on their motivations and experiences during the onboarding process. Key recommendations: This commentary provides key recommendations for AEA council development, emphasizing equity, diversity, and inclusion principles, optimizing compensation plans, adopting an iterative engagement approach, fostering capacity-building and mentorship, and promoting empowerment in decision-making.

Keywords

• Patient engagement
• Adolescents and emerging adults
• Patient advisory council