Care Coordination for Children with Special Health Care Needs (CSHCN) Challenge

The Care Coordination for CSHCN Challenge will support the development and testing of low-cost, scalable, technology-based innovations to meet the needs of children with special health care needs (CSHCN) and their families. Innovations should improve the quality of care, enhance family engagement, and positively impact health care outcomes with the potential of saving costs to families, society, and to the health care system.

CSHCN and their families are the primary stakeholders for all solutions proposed. In order to deliver improved outcomes for this stakeholder group, it is understood other stakeholders across the health care system, including providers and payers, should be involved. Solutions proposing to improve any or all aspects of the overall health care system, with the intent of driving better outcomes for children and families, will be preferred.

CSHCN have or are at risk for having a chronic physical, developmental, behavioral, or emotional condition and require health and related services beyond what a typical child needs. CSHCN account for approximately 20% of the US pediatric population. An estimated 0.5% are children with medical complexity, children with multiple chronic conditions who often require the care of a complex array of medical and other support.

For CSHCN, coordinated care by their care team, including family members, primary, specialty, and service providers, is essential to their health and well-being. However, communication and coordination across systems of care is often fragmented. Too often, family members of CSHCN serve the care coordinator role and assume full responsibility for aggregating and sharing health information across providers and settings. Families deserve complete, comprehensive, and easily accessible information about their children’s health and their care plan to ensure the best quality of care.

Health information technology (HIT) provides an opportunity to organize data from disparate sources into one cohesive patient-centered record that can effect optimal care coordination and planning for care team members across multiple systems and settings. HIT standards are available to support the bi-directional exchange of care plans and necessary health informatics for CSHCN. Despite this, most attempts to facilitate the electronic exchange of records and the sharing of right information in a timely manner among care team members have neither been scalable nor patient/family-centered.