Lived Experience Research Partners

All CYSHCNet research is dependent on relationships with people with lived experience, such as patients, family members, and caregivers. Our researchers are required to actively engage the people who know most about living with a special health care condition and medical complexity.

We define “active engagement” as a partnership between youth, families and researchers in every aspect of the research process, rather than just participation of people as subjects of research. 

The Role of a Lived Experience 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. Lived experience partners 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.

Standard Of Compensation

Lived experience partners deserve to be compensated for participation in research. Download the Standard of Compensation for Youth, Family, & Patient Partners here.

Become a Partner on a Network Research Project

If you are interested in working on a research project as a lived experience partner, please complete the form at the bottom of this page.

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.

PORCCH (Patient-Oriented Research Curriculum In Child Health)
Online, interactive learning modules to help you learn about patient-oriented research in child health, improve the revelevance and quality of research, and get more people involved. Get started here.

FESAT (Family Engagement in Systems Tool-Kit)
Family Voices developed a Framework for Assessing Family Engagement in systems-level programs, policies, and practices. Learn more.