"An Approach to Family-Centered Coordinated Co-Management for Individuals with Conditions Identified Through Newborn Screening"
W. Carl Cooley1, Alex R. Kemper2, and the Medical Home Workgroup of the National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives
Improved survival of children with serious heritable conditions through better detection and treatment has created a challenge within the healthcare system. There is a limited workforce of specialists to provide condition-specific care and primary care providers often have limited knowledge about the specific conditions. Furthermore, systems to coordinate care are often unavailable. To address the need to improve condition-specific care and other preventive and acute care management, the National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives convened an expert workgroup to develop strategies for a family-centered, community-based system of care. These recommendations recognized the importance of involving families, the primary care medical home, and specialty care teams as equal partners. Key elements include: explicit care coordination; identification of the location of management, which can change over time; and planned co-management. Recommendations for achieving these goals include developing a clearinghouse of tools, improving electronic health record systems, prospective research to evaluate the effectiveness of interventions to improve co-management, and aligning incentives for healthcare providers and families to work together.