THE HEALTH OF CHILDREN AND YOUTH WITH SPECIAL HEALTH CARE NEEDS THROUGH MULTI-SITE HEALTH SYSTEMS RESEARCH
THE NATIONAL RESEARCH AGENDA ON HEALTH SYSTEMS FOR CHILDREN AND YOUTH WITH SPECIAL HEALTH CARE NEEDS
EMERGING INVESTIGATORS ON HEALTH SYSTEMS RESEARCH FOR CHILDREN AND YOUTH WITH SPECIAL HEALTH CARE NEEDS
CHILDREN AND YOUTH WITH SPECIAL HEALTH CARE NEEDS AND FAMILY LEADERS IN EVERY RESEARCH STUDY
The U.S. health system, historically, has not been well equipped to serve children and youth with special health care needs (CYSHCN). Network research holds great promise for improving health systems for CYSHCN in a way that enables learning across multiple sites and systems and creation and application of new knowledge that is nationally generalizable. In 2017, the U.S. Maternal and Child Health Bureau, Health Resources and Services Administration entered into a Cooperative Agreement to establish a national Health Systems Research Network for CYSHCN to promote and conduct this research.
Our 9 network sites have deep front-line clinical care experiences with 300,000 active CYSHCN patients across the care continuum with over 1,500,000 outpatient; 225,000 emergency department visits; and 50,000 inpatient annual visits. Network researchers across the 9 sites are proficient in myriad designs, including case-control, time series, clinical trials, difference-in-difference, focus group, interview, survey, systematic review, and other research methods. The network hosts a secondary data center of local, regional, and national healthcare claims and surveys for CYSHCN.