Youth, Family, & Patient Research Partners

"ACTIVE ENGAGEMENT" A partnership between youth, families and researchers in every aspect of the research process, rather than just participation of people as subjects of research. 

Your Role as a Youth, Family, or Patient Research Partner

As part of the research team, you bring your first-hand experience and the experiences of many other families. These experiences help researchers design health-related research that is important to youth, families, and patients. Youth, families, and patients also help researchers understand the results of a study, and put the results into practice in the real world.

In turn, you bring the perspective of someone very close to, but not a part of the health care system. You are an expert in navigating the parts of the health care system that are important to you or your child. You know how the system really works as opposed to how it was designed to work.

Become a Partner on a Network Research Project

If you are interested in working on a research project as a youth, family, or patient partner, please fill out the form on the bottom of the home page and tell us about your interest in the Comments section.

Resources for Families of CYSHCN

Glossary of Research Terms
Reading research papers can be frustrating if you are not familiar with the jargon. To help you keep up with the latest findings in CYSHCN research, we have provided a link to a comprehensive glossary of research terms. 
Read the glossary here: Glossary

A Framework for Assessing Family Engagement in Systems Change
Family Voices is pleased to share our Issue Brief, A Framework for Assessing Family Engagement in Systems Change, funded by the Lucile Packard Foundation for Children’s Health. This is the result of a year-long project, conducted in collaboration with family-to-family organizations and diverse stakeholders, to identify the four domains and key criteria that organizations can use to identify how well they engage families at the systems level of their work (including research).
Read and download the Issue Brief here. Please share the Issue Brief widely with your families and professional partners. Thank you!

Standard Of Compensation

Download the Standard of Compensation for Youth, Family, & Patient Partners here.