Best Practices for Engaging Patient, Youth, & Family Leaders as Research Partners

Purpose

While the role of youth and family partners (YFP) has been expanding, defining the most effective strategies for YFP collaboration on research has lagged. This project will create a guide to help researchers, youth, and families understand the benefits of partnering on research projects and the nuances of successful partnership. The guide will aim to clarify the roles of YFPs, ensure that research questions reflect the needs of children, youth and families, and enhance understanding of how researchers and YFP can learn from each other to make studies more robust and actionable. This guide will be a follow-up to A Standard of Compensation for Youth and Family Partners.