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Integration of Child Health Information Systems for Newborn Screening Improvement

Learn about the integration of Child Health Information Systems (CHIS) with public health data standards to enhance newborn screening programs and improve access to quality services. Explore best practices and tools for program managers in this vital initiative.

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Integration of Child Health Information Systems for Newborn Screening Improvement

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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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