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Integration of Child Health Information Systems (CHIS)
Public Health Data Standards Consortium March 2004
Deborah Linzer, MSMCHB/Genetic Services Branch
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
“Each year 4 million U.S. infants are screened to detect conditions that threaten their life and long-term health…”
Newborn Screening
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
Integrated CHIS Coordinated services facilitate entry
into a community based system of services
Improvement in the health and quality of life
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
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
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
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
Sourcebook
Describes States demonstrating best practices in the integration of newborn blood spot screening programs with other public health programs & their information systems
9 Key Elements
Leadership Project Governance Project
Management Stakeholder
Involvement Organizational &
Technical Strategy
Technical Support & Coordination
Financial Support & Management
Policy Support Evaluation
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
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
All Kids CountPublic Health Informatics
Institute(AKC/PHII)
The Sourcebook & Tool are available at www.phii.org
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
Next Steps
Newborn Screening Informatics Practice Network (SIP)
Evaluation of State of the States New State Grants
Program Contact
Deborah Linzer, MS Health Resources & Services AdministrationMaternal & Child Health BureauGenetic Services Branch
http://mchb.hrsa.gov/