Newborn dried bloodspot screening: mapping the clinical and public health components and activities

Purpose: To define components and activities of the entire Newborn Dried Bloodspot Screening process, highlighting long-term follow-up-both clinical and public health-as a basis for defining requirements for information systems to support the process. Methods: Convene a workgroup of experts involved in various aspects of Newborn Dried Bloodspot Screening and conduct an analysis of the components and activities involved, applying Business Process Analysis, part of a collaborative requirements definition process conceived by the Public Health Informatics Institute. Results: The Newborn Dried Bloodspot Screening workgroup identified four primary business processes: screening, confirmatory/diagnostic testing, transition to long-term follow-up, and intervention management (long-term follow-up). Longterm follow-up includes care coordination/ongoing treatment, continuous quality improvement, knowledge generation, and knowledge management and dissemination. In addition, the Newborn Dried Bloodspot Screening workgroup identified public health care coordination as a new and important role to assure successful long-term follow-up. This role is defined in some detail. Conclusion: Successful newborn screening systems rely on effective partnerships to ensure that there is appropriate screening, diagnosis, and follow-up. Coordinating care across multiple settings and service providers, ensuring continuity of care over time, and generating new knowledge about heritable disorders requires information systems that can fully support the process. Developing such information systems requires a clear understanding of the Newborn Dried Bloodspot Screening process and documentation of the roles and responsibilities for all involved. Business process analysis can be applied to Newborn Dried Bloodspot Screening and other child health programs to help achieve that outcome. Genet Med 2009:11(6): 418-424.