In Tennessee, birth defects remain the leading cause of infant deaths, comprising more than one in five (21.0%) infant deaths from 2012-2017. In this timeframe, Tennessee had an average of approximately 81,000 annual live births that occurred to resident mothers, with nearly 2,800 infants per year diagnosed with a birth defect. The Tennessee Department of Health (TDH) is responsible for maintaining an ongoing program for birth defects monitoring statewide. The TDH’s Tennessee Birth Defects Surveillance System (TNBDSS), as outlined in Tennessee Code Annotated § 68-5-506, is a statewide surveillance program. The TNBDSS is charged with identifying children with birth defects; providing guidance on prevention efforts; and linking families to needed services, such as early intervention, medical financing assistance, and family support. The TNBDSS is transitioning to an internet case management system (iCMS) module and file upload feature. This system is connected to the existing Newborn Screening iCMS and can now receive information from Health Information Exchanges (HIE) in Tennessee and hospital Electronic Health Records (EHR) via file upload, which allows for faster, more complete identification of cases.
TDH proposes to use resources from the cooperative agreement to support strategies and activities that will, for Component A: (1) strengthen the tracking and surveillance capacity of the TNBDSS that follows national standards; (2) improve the efficiency and effectiveness of the TNBDSS’s surveillance methodology; (3) assess and improve the TNBDSS’s readiness to exchange data with EHRs; (4) routinely monitor and improve the TNBDSS’s data quality based on CDC’s recommended quality measures and targets; (5) assess birth defects’ mortality and survival rates using TNBDSS’s linked vital records data sets; (6) prepare and report birth defects datasets based on CDC guidance; (7) collaborate with the CDC to analyze and disseminate the TNBDSS’s surveillance data; (8) enhance the TNBDSS’s efforts to utilize surveillance data in the identification of at-risk populations; (9) augment the TNBDSS’s work to implement data driven prevention strategies; (10) continue the TNBDSS’s work to improve and expand referrals to services; (11) continue TNBDSS’s work with the Tennessee Early Intervention System to develop a Memorandum of Understanding to share individualized outcome data; and (12) develop at least two evaluation projects and submit findings for scientific publication or presentation. For Component B: utilize existing relationships with the Office of Informatics and Analytics and with CDC guidance, develop and implement a plan for EHR-surveillance system interoperability to demonstrate TNBDSS’s capability to exchange data with EHRs. For Component C: leverage the interoperability developed between the TNBDSS and the Tennessee Newborn Screening program to enhance existing Critical Congenital Heart Defect (CCHD) surveillance to report individualized CCHD data to the CDC.
The TNBDSS is committed to achieving these stated program outcomes: (1) strengthen the TNBDSS’s surveillance of birth defects; (2) improve the quality of TNBDSS’s birth defects surveillance data; (3) increase the TNBDSS’s contribution to multi-state data in scientific understanding of birth defects epidemiology; (4) increase the knowledge of the prevention of birth defects; (5) increase Tennessee’s ability to rapidly respond to emerging threats to mothers and babies; (6) improve the understanding of the characteristics of individuals affected by birth defects; (7) increase the TNBDSS’s dissemination of birth defects data; (8) increase the ability for TNBDSS to support the primary and secondary prevention of birth defects; (9) improve the prevention of birth defects; (10) improve birth and health outcomes; and (11) improve the quality and duration of life for individuals with birth defects.