Fragmentation and Integration in Newborn Screening Programs

Background: Newborn screening (NBS) programs have been administered by state health agencies since the 1960s, and current configurations reflect variations in state health agency structures along with relevant statutes and regulations. 

Objective: As part of an extensive study of state newborn screening, we identified factors supporting and hindering NBS program integration.

Methods: We conducted an extensive review of relevant literature, websites, and NBS program documentation, then conducted semi-structured interviews with state program officials and federal experts in NBS.  The interviews were recorded and analyzed for factual as well as thematic content.  Findings were compiled and reviewed with several of the interviewees.

Results: The typical state NBS program is fragmented into at least two distinct part.  Officials responsible for the lab-based testing, reporting, and follow-up usually work in different agency branches from those concerned with facility-based testing, and results are often reported in distinct systems that lack interoperability.  Barriers to NBS system integration include statutory and regulatory allocations of responsibility, differences in characterization of disorders, designation of funding streams, and agency leaders’ disinterest.  NBS systems were more likely to be integrated if they were well-supported financially, included a robust research component, had stable lay engagement, and established relationships with providers.

Conclusion: While some NBS programs are better-integrated than others, system integration may be challenging to replicate where agency structures and allocation of responsibilities separate NBS program elements.  Leaders who value maternal-child system integration in general and understand the need for NBS program integration can effectuate change.