Fragmentation and Integration in Newborn Screening Programs
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.
Learning Areas:Conduct evaluation related to programs, research, and other areas of practice
Public health administration or related administration
Public health or related laws, regulations, standards, or guidelines
Public health or related public policy
Systems thinking models (conceptual and theoretical models), applications related to public health
Identify barriers and supports to newborn screening system integration Describe the potential negative consequences of newborn screening program fragmentation Evaluate strategies to promote newborn screening program integration
Keyword(s): Policy/Policy Development
Qualified on the content I am responsible for because: I recently completed an extensive study of state newborn screening programs funded by ASPE and CDC, and have submitted manuscripts based on that research for peer-reviewed publication (not on the topic of the abstract, though).
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.