Improving Newborn Screening Through Interoperability


Newborn screening programs are a vital public health resource that enable millions of infants to benefit from early detection and intervention of genetic, endocrine, metabolic, hearing, and critical congenital heart conditions. Yet in many jurisdictions across the country newborn screening data is fragmented, siloed, and subject to different screening procedures, turnaround times, and methods of interpreting results.


Altarum and its partners are helping states and jurisdictions address these gaps, creating a more streamlined and uniform system of newborn screening and reporting. We are building an online Resource Center for the exchange of knowledge with experts and peers, providing interoperability training, assessing state interoperability readiness, and creating customized roadmaps for states to help them reach specific interoperability objectives.

This builds on our two decades of experience advancing state health information exchange and interoperability, which includes developing solutions using a variety of products including Fast Healthcare Interoperability Resources (FHIR), CDA and HL7 Version 2; building applications that support information exchange for disease surveillance and care coordination; and helping to create national standards for electronic birth defect reporting, newborn screening early hearing detection and intervention, and critical congenital heart defects and disease.


While this HRSA-funded effort is just getting started, several states have already been accepted into the initiative. By improving connectivity between state public health newborn screening programs and health care providers, this program will help reduce morbidity and mortality associated with heritable disorders in newborns and children.


Craig Newman
Public Health Interoperability Expert