Integration of Child Health Information Systems (CHIS) Public Health Data Standards Consortium March 2004 Deborah Linzer, MS MCHB/Genetic Services Branch

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

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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

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

• NBS systems are State based with variation in how
  they are administered
• Public Health Departments must ensure NBS
  benefits the publics health
• Use of IT in NBS systems is rapidly expanding

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Integrated CHIS

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

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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

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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

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State Planning/ Implementation Grants

• Integration of NBS programs with other points of
  early identification of children born with
  heritable congenital conditions
• Integration of points of early identification
  with systems of early intervention

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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

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Sourcebook

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

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9 Key Elements

• Leadership
• Project Governance
• Project Management
• Stakeholder Involvement
• Organizational Technical Strategy

• Technical Support Coordination
• Financial Support Management
• Policy Support
• Evaluation

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Tool

• To help Program Managers
• Characterize a strategic vision
• Assess organizational readiness
• Determine where program stands in the projects
  life cycle
• Question data integration needs strategies

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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

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• All Kids Count
• Public Health Informatics Institute
• (AKC/PHII)
• The Sourcebook Tool are available at
  www.phii.org

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National Newborn Screening Genetics Resource
Center (NNSGRC) Information on MCHBs initiative
to Integrate Newborn Screening Systems is
available at http//genes-r-us.uthscsa.edu
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Next Steps

• Newborn Screening Informatics Practice Network
  (SIP)
• Evaluation of State of the States
• New State Grants

In Progress
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Program Contact Deborah Linzer, MS Health
Resources Services Administration Maternal
Child Health Bureau Genetic Services
Branch 301-443-1080 dlinzer_at_hrsa.gov
http//mchb.hrsa.gov/
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Newborn Screening Improves Saves Lives