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

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

[email protected]

http://mchb.hrsa.gov/

Newborn Screening Improves & Saves Lives