Cooperative newborn screening system priorities program - this project will lead to a comprehensive approach to improving the washington newborn screening (NBS) program by focusing on quality…

Cooperative newborn screening system priorities program - this project will lead to a comprehensive approach to improving the washington newborn screening (NBS) program by focusing on quality improvement, data management, and strategies for short- and long-term follow-up . The activities will enhance the efficiency and equity of the NBS program by using a multidisciplinary approach to improve timeliness and quality of newborn screening specimens, monitor new disorder implementation, and strengthen short-term follow-up while building a long-term follow-up system. There are two objectives. The first objective targets improvements in screening, education, specimen collection, and timeliness. This will be accomplished through a systematic approach to monitoring the addition of conditions added to the recommended uniform screening panel, collaborating with the washington state board of health, and creating educational materials for primary care providers, and families. Efforts to reduce unsatisfactory specimens will include developing guidelines, educational materials, and training programs for healthcare professionals. Our team will also address demographic errors on specimen cards using a continuous quality improvement approach targeting birthing facilities, emphasizing the NBS champion model, and exploring solutions during electronic transmission of results implementation. We will also engage in activities aimed at timeliness improvements for non-hospital submitters, particularly midwives. This includes leveraging educational videos and creating materials for courier services, with ongoing analysis and outreach to enhance compliance. The second objective focuses on improving short-term and long-term follow-up systems, emphasizing stakeholder engagement and exploring interoperability. To gain an understanding of the family experience, our team will gather insights from families and clinicians, with a focus on conditions such as cystic fibrosis and hemoglobinopathies. Short-term follow-up enhancemen t activities include modifying educational materials, improving diagnosis/disposition code entry, and addressing common misunderstandings among providers. To establish the foundation for long-term follow-up, our team will define minimal data sets, identify potential data homes, and assess the impact of long-term follow-up. The proposal outlines a phased approach to exploring and defining long-term follow-up and developing a strategy for the interoperability of a long-term follow-up system. This involves assessing the current state of washington's interoperability environment, developing a roadmap for implementation, and exploring options for data extraction from electronic health records. The plan includes pilot testing the interoperability framework, providing ongoing technical assistance, and evaluating the impact on NBS metrics. This multifaceted strategy aims to significantly enhance the efficiency, equity, and overall effectiveness of the washington NBS program, setting the stage for improved data management and follow-up procedures for newborn screening disorders.