National Research Agenda on Health Systems for Children and Youth With Special Health Care Needs

Children and youth with special health care needs (CYSHCN) “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.” CYSHCN rely on health systems, which extend beyond traditional health care entities, to optimize their health and well-being. The current US health system is not fully equipped and functioning to meet the needs of CYSHCN. Recognizing this, the Maternal and Child Health Bureau and the US Health Resources and Services Administration established the Research Network on Health Systems for CYSHCN (CYSHCNet, http://www.cyshcnet.org). With input from >800 US stakeholders, CYSHCNet developed a national research agenda on health systems for CYSHCN 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. We introduce the 6 research topics currently included in the research agenda—transition to adulthood, caregiving, family health, child health care, principles of care, and financing—to inform and guide investigators as they embark on a trajectory of health systems research on CYSHCN.