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Systems Integration

The Next Frontier in Newborn-Screening Timeliness

Simon, Norma-Jean MPH, MPA; Atkins, Anne MPH; Yusuf, Careema MPH; Tarini, Beth A. MD, MS

Journal of Public Health Management and Practice: February 14, 2019 - Volume Publish Ahead of Print - Issue - p
doi: 10.1097/PHH.0000000000000968
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Context: In 2015, the United States Federal Advisory Committee on Heritable Disorders in Newborns and Children issued recommendations for state-based newborn screening programs to benchmark improvements in newborn-screening timeliness. Newborn screening (NBS) timeliness encompasses the efficient collection, transportation, testing, and reporting of results. Nearly all state programs fail to achieve recommended timeliness benchmarks.

Objectives: Our study explored the processes and procedures that accelerate or hamper progress toward improving NBS timeliness from a public health laboratory program perspective.

Design: We conducted semistructured interviews to elicit public health laboratory perspectives on NBS specimen delivery, laboratory testing and processing, communication of results to birthing providers, program staffing, and quality measures and data sharing. A content analysis explored practices, processes, and procedures related to NBS timeliness. A secondary analysis examined interorganizational strategies to enhance timeliness outcomes among NBS stakeholders.

Participants: Ten laboratories participated in the study (n = 21 personnel). Participants included public health laboratory directors, NBS program managers, and NBS follow-up program staff.

Results: Efforts to improve NBS timeliness included engaging birthing providers, expanding courier services, extending operating hours, modifying staffing schedules, and implementing cross-training schedules to facilitate prompt collection, transport, and processing of NBS specimens. Sustained improvements will require implementing robust data systems, integrating laboratory and follow-up processes, and improving communication among all NBS stakeholders. Programs expressed a desire to refine timeliness metric definitions to ensure useful comparisons across states.

Conclusions: Efforts to improve timeliness have accelerated in recent years; sustained progress will require increased coordination and integration among stakeholders in the NBS delivery system.

Division of Emergency Medicine, Ann & Robert H. Lurie Children's Hospital, Chicago, Illinois (Ms Simon); Center for Translational Science, Children's National Health System, Children's National Medical Center, Washington, District of Columbia (Ms Atkins and Dr Tarini); and Association of Public Health Laboratories, Silver Spring, Maryland (Ms Yusuf).

Correspondence: Norma-Jean Simon, MPH, MPA, Division of Emergency Medicine, Ann & Robert H. Lurie Children's Hospital, 225 E Chicago Ave, Chicago, IL 60611 (njesimon@gmail.com).

The authors acknowledge the contributions of the Michigan Department of Public Health Newborn Screening Program for their insightful review of the interview guide and Sari Edelman from the Association of Public Health Laboratories for assistance with data collection and interview transcription. This work was funded by the Robert Wood Johnson Foundation through the Public Health Services and Systems Research Program.

Support for this manuscript was provided by the Robert Wood Johnson Foundation through the National Coordinating Center for Public Health Services and Systems Research, ID 72453. The views expressed here do not necessarily reflect the views of the Foundation, the Children's National Medical Center, the Ann & Robert H. Lurie Children's Hospital, or the Association of Public Health Laboratories.

The authors declare no conflicts of interest.

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