Standard of Compensation for Youth and Family Partners on Research Teams
|Colorado||Community||CYSHCN||Family & Youth Engagement|
Youth, families, and patients who work as partners on research projects should be compensated for their work and lived experience in more than pizza or parking fees. The Standard of Compensation for Youth and Family Research Partners (SoC) helps PIs budget for including youth, families, and patients as full members of a research team and ensuring compensation is fair. It considers the rich lived experience of partners and outlines for youth, families, and patients what they should expect as partners.
Up to now there has not been a guide to compensating youth, family, and patient leaders (YFP) who are co-investigators on research projects. While funders are beginning to suggest or require that YFP be included as full partners on research projects, none have guidance about compensation outside of a suggestion that YFP be paid and/or their expenses be covered. Therefore, YFP are often offered a token amount of compensation such as a gift card or lunch, or they are considered volunteers. Yet YFP are expected to contribute the same type of expertise as any other member of the research team to a project. There is a body of literature that suggests engaging families in research at the level of co-Principal Investigator (co-PI) makes research more relevant to the needs of patients and families. The literature spells out myriad ways in which research is more impactful such as tackling questions that are important to patients and families vs. to a researcher. This guide provides concrete information, recommendations, and examples for research teams, including specific dollar amounts that YFP should be paid, yet it allows for flexibility in the project budget. It even speaks to how to pay YFP if the PI is a student with little or no funding for YFP partners. There are separate guides for youth and families and PIs. The YFP version includes a comprehensive glossary of research terms and is written in plain language.