Network News

The National Research Agenda on Health Systems for Children and Youth With Special Health Care Needs is out.

The supplement to Academic Pediatrics provides a blueprint of research priorities aimed at improving the health and well-being of CYSHCN and their families and caregivers.

The supplement encompasses seven papers that explain each of the agenda’s priority topics plus an executive summary paper. The research topics were identified through a rigorous process known as the RAND/UCLA Appropriateness Method (RAM). Through this process, a diverse group of stakeholders, including youth and family caregivers, identified the following priorities: 

• Child health and social determinants of health, to examine how the places people live, learn, work, and play impact health
• Family health and how to support the adaptability of families with CYSHCN
• Caregiving and at-home support 
• Telemedicine and supporting families living in rural areas
• Principles of care, to better understanding the keys to successful care management
• Health care financing, including payment models and value outcomes (webinar coming soon)
• Youth-to-adult transitions and how gaps in support impact outcomes

Follow CYSHCNet on LinkedIn and Twitter as we take a deeper dive into each area of the agenda. Please share with your networks!

Meet a Researcher

James Perrin, MD, on Teamwork, Families, and the Future of Health Systems Research

“The questions that have been raised on the research agenda are actually pretty hard to answer. It's a pretty ambitious record set of recommendations, and I think we'll be working for quite a while to answer them.”

When James Perrin, MD, graduated from medical school, national research networks like CYSHCNet didn’t exist. There weren’t many pediatricians talking about chronic illness and childhood, at all.

This led Perrin and a small group of like-minded pediatricians to form a research consortium. The group met for 25 years.

“We all grew older together,” explains Perrin, professor of pediatrics at Harvard Medical School. “In those days, it was hard to garner much interest or attention.”

It’s why the national reach of CYSHCNet is so exciting to him.

“Look at this network, and how many people are really engaged with this work. It’s a tremendous groundswell of change in this field.”

Conferences and Events

Information is up-to-date as of March 23, 2022.

• CYSHCNet Annual Meeting: April 20 | Virtual | Registration information coming soon
• Pediatric Academic Societies (PAS) 2022: April 21-25 | Denver, Colorado | Register
• 2022 COPRH Con Virtual Conference: May 23-25 | Virtual | Register
• Association of Maternal & Child Health Programs (AMCHP) 2022 Annual Conference: May 24-26 | Virtual | Register
• AcademyHealth Annual Research Meeting: June 4-7 | Washington DC | Register
• Family Voices Family Leadership Conference: October 18-20 | Washington DC and Virtual | Register

In the News

• Dangerous Levels of Lead Were Found in the Water of About Half the Schools Tested in Montana. In 2020, the Montana Department of Health and Human Services implemented a rule requiring that schools check their drinking water quality every three years at minimum. The first deadline for this was December 31, 2021. Of the 222 schools that have complied with this rule so far, more than half of them found unacceptably high levels of lead contamination. There is no safe level of lead in the human body, and children are particularly vulnerable to its effects, which can include long term nervous system and organ damage, slowed development, and speech/behavioral problems.
• COVID-19 in Pregnancy Tied to Poor Birth Outcomes. Researchers in the United Kingdom surveyed over 4000 pregnant women who had been hospitalized with COVID-19 during pregnancy. The results of this research suggest a link between severe COVID-19 and poor birth outcomes. These include preterm births, stillborn births, pre-labor caesarean birth, and other conditions requiring admission to a neonatal care unit. These results were corroborated by similar research in the UAE, and demonstrate the importance of vaccine promotion for individuals in high-risk groups, such as pregnant women with risk factors for severe COVID-19.
• This Doctor Thought She Could Navigate US Health Care. Then Her Autistic Son Needed Help. This piece tells the story of Alex, a teenager who is on the autism spectrum and whose parents, in spite of being medical professionals themselves, have struggled to find adequate care and support for their son. This article highlights the challenges of accessing and navigating behavioral health services in the United States.
• Child Abuse Victims Can Now Avoid Police Stations, Reduce Trauma at First-of-Its-Kind Center in Colorado Springs. Safe Passage is now home to the city’s crimes against children unit, child protection caseworkers, forensic nurses, therapists and an abuse prevention nonprofit. Here, a child has to tell their story only once. 
• $76 Million Could Fix Colorado’s Youth Mental Health System. Residential treatment centers for youth have warned for years that they’re headed for collapse. A coalition that includes not just the treatment centers but Children’s Hospital Colorado and county human service directors is pointing toward a solution. They are on a lobbying campaign to get lawmakers to act on an actuarial study that found it would cost $76 million to fully fund Colorado’s residential centers for children with severe mental health needs. 
• Improving Child Physical Abuse Detection & Reducing Disparities Within and Between Hospital Settings. This solutions-focused Evidence to Action brief reviews data on disparities in child abuse evaluation in hospital settings, reports the results of efforts to address this critical issue, and proposes recommendations to improve evaluations for child physical abuse, decrease disparities and protect children who have been abused from further harm.

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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