Long-term follow-up in newborn screening: A systems approach for improving health outcomes

Background: Newborn screening is a complex system of interrelated multidimensional components singly focused on safeguarding the health of our nation's newborns. The long-term health outcome and well-being of individuals identified by newborn screening represents a meaningful measurement of the performance of the newborn screening system. This assessment of long-term follow-up requires a systems approach that connects 'stakeholders, processes, and outcomes through the collection, integration, evaluation, and sharing of key data and metrics. Methods: A review of the principles of a systems approach and its application to newborn screening long-term follow-up was performed. Past and current efforts by HRSA/MCHB that address individual components of newborn screening were assessed and utilized to outline lessons learned and suggest next steps. Results: The principle features of a systems approach applied to the creation and utilization of a health information exchange system for the long-term follow up of screen positive patients is defined. The application of this approach is in progress through the HRSA/MCHB's Effective Follow-up in Newborn Screening project. Conclusions: While several elements are in place to realize a systems approach, the authors think that the key is an integrated, multidirectional health information exchange system that functions locally, regionally and nationally, and enables information exchange between private and public health sectors. Genet Med 2010:12(12):S256-S260.