Children and youth with special health care needs (CYSHCN) are those who “have or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and also require health and related services of a type or amount beyond that required by children generally.” An estimated 14.1 million US children and youth (∼20%) have a special health care need. This paper from HIP Investigator Dr. Ryan Coller describes how with input from >800 US stakeholders, CYSHCNet developed a national research agenda on health systems for CYSHCN.
This agenda is designed to: 1) highlight important health system challenges faced by key stakeholders (ie, patients and families, health care providers, insurers, administrators, etc.); 2) organize research topics and goals to identify opportunities for improvement, to address challenges and to promote progress toward the ideal health system; and 3) provide a blueprint for health systems research ideas and studies that will guide CYSHCN investigators and other stakeholders going forward.
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