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

Organization: University of Colorado Denver

Primary Contact: Charlene Shelton

Grant Amount: $122,195 for 18 months

Date Awarded:

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, which is available at CYSHCNet.org.

Resources From This Grant

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Lived Experience in Health Care and Health Systems Research

Research & Reports

This handbook provides guidance to ensure that researchers, families, and patients work collaboratively on research studies in which all participants' input is valued.

Other Grants to the Same Organization

Publishing and Disseminating A National Research Agenda for Children and Youth with Special Health Care Needs (CYSHCN)

The U.S. health care system is not well equipped to serve children and youth with special health care needs. With federal funding, the CYSHCN National...