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Newborn Screening Task Force Report

Integration of Child Health Information Systems (CHIS) Public Health Data Standards Consortium March 2004 Deborah Linzer, MS MCHB/Genetic Services Branch. Newborn Screening Task Force Report. Vol. 106, Aug. 2000, Suppl. Approved by: AAP Board of Directors AAP Committee on Genetics

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Newborn Screening Task Force Report

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  1. Integration of Child Health Information Systems (CHIS) Public Health Data Standards ConsortiumMarch 2004Deborah Linzer, MSMCHB/Genetic Services Branch

  2. Newborn Screening Task Force Report • Vol. 106, Aug. 2000, Suppl. • Approved by: • AAP Board of Directors • AAP Committee on Genetics • AAP Committee on Fetus & Newborn • Medical Home Initiatives for Children with Special Needs - Project Advisory Committee • AAP Task Force on Newborn & Infant Hearing

  3. Newborn Screening “Each year 4 million U.S. infants are screened to detect conditions that threaten their life and long-term health…”

  4. Current Newborn Screening Environment • NBS systems are State based with variation in how they are administered • Public Health Departments must ensure NBS benefits the public’s health • Use of IT in NBS systems is rapidly expanding

  5. Integrated CHIS • Coordinated services facilitate entry into a community based system of services • Improvement in the health and quality of life

  6. Integrated CHIS • Coordination between programs • Integration of public health & personal health services data • Linkage of clinically useful data to improve access to high quality services • Continuous quality improvement

  7. Integrated CHIS • Title V MCH SPRANS Genetic Services • Planning Grants to 22 States • Implementation Grants to 11 States • Joint Program Initiative Grants to 5 States • Sourcebook for Planning & Development • A Tool for Assessment & Planning • Framework for Integrating CHIS • National Newborn Screening & Genetics Resource Center

  8. State Planning/ Implementation Grants • Integration of NBS programs with other points of early identification of childrenborn with heritable & congenital conditions • Integration of points of early identification with systems of early intervention

  9. Sourcebook & Tool • MCHB  PHII/AKC • Integration of NBS & Genetic Service Systems with Other Maternal & Child Health Systems: • A Sourcebook for Planning & Development • A Tool for Assessment & Planning

  10. Sourcebook • Describes States demonstrating best practices in the integration of newborn blood spot screening programs with other public health programs & their information systems

  11. Leadership Project Governance Project Management Stakeholder Involvement Organizational & Technical Strategy Technical Support & Coordination Financial Support & Management Policy Support Evaluation 9 Key Elements

  12. Tool • To help Program Managers: • Characterize a strategic vision • Assess organizational readiness • Determine where program stands in the project’s life cycle • Question data integration needs & strategies

  13. Integrated CHIS • MCHB  PHII/AKC • Three year project to: • Define the long-range vision • Expand the conceptual vision for transitioning from current practice • Build a business & a policy case for integration of NBS with related CHIS

  14. All Kids Count Public Health Informatics Institute (AKC/PHII) The Sourcebook& Tool are available atwww.phii.org

  15. National Newborn Screening & Genetics Resource Center (NNSGRC) Information on MCHB’s initiative to Integrate Newborn Screening Systems is available at: http://genes-r-us.uthscsa.edu

  16. Next Steps • Newborn Screening Informatics Practice Network (SIP) • Evaluation of State of the States • New State Grants In Progress

  17. Program Contact Deborah Linzer, MS Health Resources & Services Administration Maternal & Child Health Bureau Genetic Services Branch 301-443-1080 dlinzer@hrsa.gov http://mchb.hrsa.gov/

  18. Newborn Screening Improves & Saves Lives

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