20881 Progress Toward Implementation of Data Standards Related to Automated Newborn Dried Blood Spot Screening Reporting and Data Sharing

Wednesday, September 2, 2009: 2:10 PM
Hanover C/D
David A. Ross, ScD , Public Health Informatics Institute, Taskforce for Global Health, Decatur, GA
Newborn Dried Bloodspot Screening (NDBS) for genetic and metabolic disorders is mandated in every state in the country, which has led to a nearly 100% rate of screening.  These tests represent high volume and highly technical laboratory analyses.  Recent advances in tandem mass spectrometry enables detection of conditions for which immediate intervention can prevent disabilities and premature death using small blood samples collected on filter paper during the first few days of a child’s life. The panel of tests conducted has since increased to include additional treatable disorders for which clinical interventions to prevent complications are possible.
Because NDBS can reveal serious conditions that may be life threatening, timely analysis of specimens and reporting of results to families and their physicians is essential.  For this reason, the Office of the National Coordinator for Health Information Technology at the Department of Health and Human Services (DHHS/ONC) determined that automation of the newborn screening process represents a priority for e-health initiatives.  Within DHHS/ONC, a workgroup developed a NDBS use case to promote full implementation of electronic health technologies for specimen collection, results reporting, interventions, and case management. To support that work, The Public Health Informatics Institute in partnership with the Association of Public Health Laboratories, the HRSA Maternal and Child Health Bureau, and Regenstrief Institute developed an implementation guide using standard HL7 version 2.3.1 coding structures and LOINC codes to assist the reporting of NDBS laboratory results to birthing hospitals, physicians of record, and public health NDBS program staff.  In addition, the guide provides specific guidance on composition of standard messages so laboratories and birthing facilities can implement standards-based data exchange.
This presentation will review the business processes associated with NDBS screening, present the components of the HL7 implementation guide and address next steps needed to complete the automation of NDBS-related orders.