State newborn screening system priorities program - the indiana department of health (idoh) recognizes several immediate needs to improve the state newborn screening system

Indiana is committed to improving the efficiency and timeliness of result reporting, improving the short-term follow-up process, and establishing a long-term follow-up process. Idoh believes the state newborn screening system priorities program (NBS propel) hrsa funding opportunity is critical for indiana's current momentum towards sustainably improving the health outcomes of individuals at risk for and living with heritable conditions from newborn screening. In the last several years, indiana's newborn screening program has seen an emerging need to address timeliness of specimen collection, screening, and result reporting. In order to overcome this challenge, indiana believes interoperability between the hospital system, the newborn screening lab, and the department of health will reduce time delays. Indiana has taken steps to achieve interoperability by participating in the hrsa funded innovations in newborn screening interoperability project and echo calls. Indiana plans to implement the developed interoperability roadmap to achieve more timely specimen collection, screening, and result reporting. Achieving interoperability will also improve short-term follow-up and allow for the development of long-term follow-up in indiana. Currently, all hospitals are required to manually enter exceptions to screening monthly into a data system at the department of health which allows the department to follow-up and ensure all newborns receive mandated screening. However, the current process includes up to a 45-day delay in reporting an exception, severely impacting the timeliness of following-up with infants who were not screened. Additionally, achieving interoperability will provide newborn screening results directly to providers through indiana health information exchange interfaces already in use by providers eliminating the need for providers to check multiple data systems for results. The indiana newborn screening program is facing additional challenges within the short-term follow-up and long-term follow-up processes. Indiana aims to improve the current short-term follow-up process and health outcomes for patients identified with or at risk for newborn screening condition. The strategies to improving short-term follow-up include development of interoperable systems, expansion of prenatal and family education, improvement of the data from funded care coordination partners, translation of education materials into other primary spoken languages, and improvement of monthly hospital reporting. Indiana recognizes that improvements in health outcomes cannot be made without a long-term follow-up process. Indiana aims to launch long-term follow-up for one condition initially with the goal to expand once best practices are developed. Throughout the activities to improve the newborn screening system, indiana will empower families to actively engage with the newborn screening program to ensure that the work conducted is meaningful to the populations served. Improvements made to both areas of follow-up will ultimately lead to improved health equity and access to services along with better quality of life for individuals and families at risk for or living with heritable conditions. Idoh will be resourceful and innovative in its approach while fulfilling all requirements for the state newborn screening system priorities program hrsa funding, if granted the opportunity. Idoh will collaborate with the national center for newborn screening system excellence recipient as required. Idoh will implement interoperability and improve timeliness, short-term follow-up, and long-term follow-up to better serve newborns and families across indiana. Ultimately, leading to better health outcomes for people at risk for and living with heritable conditions in indiana.