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Health Resources and Services Administration
Maternal and Child Health Bureau
Integration of NBS with other MCH Systems: A Sourcebook & Tool for Assessment & Planning
EHDI ConferenceFebruary 2004
Deborah Linzer, MS
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Child Health Profile
Goal is to develop a unified record on every child to: capture accurate information in a timely manner support decision-making at the point of service support program needs
Integrating information systems so that the information user has access to complete & accurate information about a child, it is anticipated that child health can be improved.
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
“Improved coordination and integration of information systems is needed.”
- Task Force for Newborn Screening, 2000
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State Planning Grants
Integration of NBS programs with other points of early identification of children born with heritable & congenital conditions
Integration points of early identification with systems of early intervention
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State Planning Grants
Retrieval of NBS information by medical home
Public health agencies collaborating Public health agencies & private
sector collaborating Community-based child health
profile
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Partnership
MCHB PHII/All Kids Count Describe States demonstrating best
practices in the integration of newborn blood spot screening programs with other public health programs & their information systems
newborn dried blood spot screening early hearing detection & intervention immunizations vital registration
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Methodology
Reviewed 1999, 2000 SPRANS grant applications (n=17)
Selected 7 as representative of broad vision & strong approach(CO, IA, MI, MO, OR, RI, UT)
Interview protocol derived from MIS literature & experience on critical success factors
Conducted 2-day site visits Synthesized discussions & common themes
Integration Sourcebook
Partnership HRSA/MCHB PHII/All Kids Count
Target: State Public Health
Teams Focus
Nine Key Elements Best Practices Two Case Studies Lessons Learned
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Key Elements
Leadership Governance Management Stakeholder
Involvement Policy Support
Organizational & Technical Strategies
Technical Support & Coordination
Financial Support & Management
Evaluation
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Case Studies
Mature Project Captures the elements that made them
successful Discusses how they put best practices into
action Summarizes their organizational, personal
talents, and systems strategies Emerging Project
Summarizes how best practices can influence their success
Discusses their goals and strategies
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Lessons Learned
Data are for sharing Communication is critical Change is hard Let public health needs drive
technology Stay the course
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Tool for Assessment & Planning
To help Program Managers Characterize a strategic vision Assess organizational readiness Determine where you stand in the
project life cycle Question data integration needs and
strategies
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Approach
Best used in early stages Focused on planning and
accountability Integrated into team’s project
management strategy Used to seek input from key
stakeholders that affect the project’s planning and early implementation stages
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Organization Questionnaire
Nine key elements Based on information systems literature Best practices demonstrated by State &
local governments
Integration Planning Matrix Sample table to assist public health
teams Future goals Strategies Dedicated staff
Tool for Assessment & Planning Partnership
HRSA/MCHB PHII/All Kids Count
Target State Public Health
Teams Companion to
Integration Sourcebook Focus on
Understanding Best practices Organizational readiness Additional strategies Accomplishments &
action steps
Questionnaire
Questionnaire
Integration Planning Matrix
All Kids CountPublic Health Informatics
Institute
The Sourcebook & Tool are available at www.phii.org
National Newborn Screening & Genetics Resource Center
Information on MCHB’s Initiative to Integrate Newborn Screening
Systems is available at:http://genes-r-us.uthscsa.edu
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Program Contact
Deborah Linzer, MS Health Resources & Services AdministrationMaternal & Child Health Bureau
301-443-1080dlinzer@hrsa.gov
http://mchb.hrsa.gov/
Newborn Screening Improves & Saves Lives