New Resource

Handbook for Working with Lived Experience Partners in Research Available for Download

“Writing this handbook was indeed a labor of love: love for all the children with special health care needs and families that we work to impact every day as health systems researchers and love for the lived-experience partners who give of their time and knowledge freely to make research more meaningful to their families and communities."

We are pleased to present the Lived Experience in Health Care and Health Systems Research handbook—the resource that we have long wished we had, and 

finally took it upon ourselves to write. Please share this resource widely!

New Resources

Work Smarter—Not Harder—

with Primary Data Center Templates and Resources

Conducting multi-site research? Jump-start your network study using the CYSHCNet Primary Data Center (PDC).

Our tools include protocols and procedures to help make studies consistent across the network. The website includes downloadable templates such as Scope of Work, Project Summary, Budget Justification, and more. You can even request examples of funded grant proposals and directly consult with the Primary Data Center Advisory Council,

Learn more and consult with the PDC using the link below.

Network News

Share this Link to Help Others Engage with the National Research Agenda

CYSHCNet developed an interactive learning platform based on our national research agenda on health systems. It describes and provides guidance on how to implement elements of the national health systems research agenda developed by CYSHCNet in 2019-21. It is easy to navigate and provides answers to the challenges you may face, tips on organizing the study, and examples of potential projects.

LANGUAGE: This project is supported by CYSHCNet, which is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under UA6MC31101 Children and Youth with Special Health Care Needs Research Network. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, and the U.S. Government.

In the News

• Teens With Addiction Are Often Left to Detox Without Medication.As the US continues to grapple with its ongoing opiate crisis, gaps in care systems for individuals struggling with substance use disorders (SUDs) emerge. In this article, the author discusses the near total lack of medication assisted detox facilities for children and adolescents. While this sort of resource is not necessary for all youth struggling with SUDs, some argue that to not provide these options at all is to minimize the suffering that they go through as they detox, or to somehow imply that they deserve to suffer. Denver Health is bucking this trend by initiating a teen detox program. 
• Parents See Own Health Spiral as Their Kids’ Mental Illnesses Worsen. The presence of serious mental or physical health problems in children can have a range of negative impacts on the mental and physical health of their parents. With record high numbers of young people experiencing mental health problems, these sorts of outcomes are becoming increasingly common. This article describes the experiences of several parents of children with mental illnesses in Texas, focusing on the challenges they face in caring for their children, and the ways in which these struggles have affected their own health.
• Two Colorado Sisters had Dozens of Seizures Every Day. Then a Genetic Test Revealed They Needed a Vitamin. Last month, Children’s Hospital of Colorado recently opened its Precision Medicine Institute. The institute aims to increase access to resources that can help specialists evaluate and treat rare medical conditions, including genetic testing, gene therapy, and personalized drugs. This article provides an example of the role that precision medicine can have in the diagnosis and treatment of rare or unknown diseases.
• Obesity Rates Among Children: A Closer Look at Implications for Children Covered by Medicaid. According to KFF, over half of all children in the U.S. are covered by Medicaid. Nationally, about 1-in-6 children in the U.S. have obesity, as classified by conventional BMI scores (note that BMI is not considered a good metric for obesity). This analysis by KFF found that children who are insured through Medicaid are more than twice as likely to have obesity than their privately insured counterparts. This trend reflects the impact of a wide range of overlapping socioeconomic factors, including systemic racism and access to healthy food options. The article goes on to discuss the effects that these trends may have in the future, including potential impacts on the Medicaid system and treatment approaches.
• Vaccination Rates for Colorado Children are Dropping, Raising Public Health Concerns about Measles. In spite of ongoing efforts to increase child vaccination rates in Colorado, measles vaccine uptake in kindergarteners is at a 5-year low in the state. As of last year, only 86.8% of CO kindergarteners had received an MMR vaccine, a number insufficient to achieve true herd immunity. There are even some schools with reported rates at or below 50%, although these extreme cases may be a partial result of poor record-keeping. While the vaccine controversy surrounding the COVID-19 pandemic is a likely contributor to these trends, some experts name additional, more chronic causes, such as lack of access to care, lack of insurance, parental business, or a lack of knowledge about free vaccine availability. This article goes into greater detail on all of these topics, and outlines efforts being made to increase child vaccination rates in Colorado.

CYSHCNet is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under UA6MC31101 Children and Youth with Special Health Care Needs Research Network. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, and the U.S. Government. Website

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