The MDH will continue to operate the Minnesota Birth Defects Information System (BDIS) and Birth Defects program consistent with established state legislation, CDC and National Birth Defects Prevention Network (NBDPN) guidelines. The project is a collaborative effort between several MDH programs and external partners such as MNIT, Minnesota Department of Education, local public health (LPH) agencies, Star Legacy Foundation, preconception health grantees, and health care providers that diagnose and treat children with birth defects. Over 2,000 children, including stillbirths are born in Minnesota each year with one of the conditions tracked by the BDIS. The program serves these children, their parents and families by linking them with appropriate services in their communities.
The program will conduct statewide active surveillance for over 60 conditions among live births and stillbirths to Minnesota resident women according to the NBDPN Guidelines for Conducting Birth Defects Surveillance. We will report minimum CDC reportable conditions (approximately 480 cases) and critical congenital heart disease (CCHD) (approximately 141 cases) to CDC, based on which components are awarded.
We will evaluate the program to demonstrate 1) improvement in surveillance capacity and data quality, and increase in contribution of multi-state surveillance pooled projects through Component A; 2) capacity of and implementation plan of electronic exchange of birth defects through Component B; and 3) improvement in accuracy, timeliness, and completeness of data for CCHDs through Component C.
In collaboration with other follow-up programs in the Children & Youth with Special Health Needs section and LPH agencies, we will continue to develop better methods to measure the needs and gaps of families for secondary prevention. We will improve documenting enrollment in services that promote early learning and development and other outcomes. Program staff will support a data-driven prevention plan that targets high-risk populations through analysis and dissemination of birth defects data.
The program will track the following outcomes:
• Increase completeness of case ascertainment by utilizing multiple data sources for potential case finding
• Decrease days to completion (i.e. improve timeliness) by prioritizing medical record abstractions for potential cases reported for the first time, CCHDs, and deceased infants
• Increase readiness of the birth defects surveillance system to exchange data with electronic health records
• Component B: Increase the health systems and EHR vendors capable of reporting birth defects using messaging
• Increase data accuracy by establishing routine case review by contracted medical specialists
• Component B: Increase the variables that meet established standards for interoperability
• Increase data completeness by establishing data assurance and verification in MEDSS
• Maintain timeliness standard level 3 by completing confirmation of 99% of cases within 2 years of life
• Decrease barriers to submitting to CDC individual-level birth defects data for Component A and Component C
• Increase completeness of data for reportable conditions listed in Component A and Component C
• Increase contribution of MN data to multi-state surveillance pooled projects
• Maintain birth defects data available to the public through the MN Environmental Public Health Tracking (EPHT) data portal and community-focused webpages I
• Increase readiness of the birth defects surveillance interoperability for electronic health records
• Component B: Increase the number of reporting facilities submitting data using messaging
• Maintain percent of children with birth defects who are automatically eligible for early intervention (IDEA Part C) in MN who are contacted by LPH to assure enrollment
• Maintain percent of stillbirths and deceased infants with birth defects whose families receive services from grief and loss support grantee (Star Legacy Foundation)