Systems of Care for Children with Special Healthcare Needs: A Patient-Centered Approach to Evaluate Public Health Roles
Abstract: Despite the apparent success that local and state health departments have had integrating a public health approach to provide programs and services for families with children who have complex health needs, there continues to be mixed results in terms of satisfaction and degree of support from this system. Systems of care for children with special healthcare needs include a patient at its center. However, current evaluations collect performance data from system stakeholders, rarely including the patient perspective. Examining the system holistically using Social Network Analysis, to include both the stakeholder and patient perspectives of how well the system is functioning affords greater understanding of how a public health approach to systems of care leads to more successful outcomes. This research identifies the discrepancies between stakeholder and patient perspectives, and suggests assessing families’ Patient-Centered Networks (PCNs) to integrate a more purposeful role for public health as gateway coordinator between the system of care, primary care physicians implementing a medical home, and leveraging of PCNs informal support networks to improve coordinated care for families.
Keywords: Systems of Care, Patient-Centered Networks, Evaluation, Public Health, Systems of Care for Children with Special Healthcare Needs