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Integration of NBS with other MCH Systems: A Sourcebook

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Title: Integration of NBS with other MCH Systems: A Sourcebook


1
Integration of NBS with other MCH Systems A
Sourcebook Tool for Assessment PlanningEHDI
ConferenceFebruary 2004Deborah Linzer, MS

2
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.

3
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

4
Improved coordination and integration of
information systems is needed.
  • - Task Force for Newborn Screening, 2000

5
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

6
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

7
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

8
Methodology
  • Reviewed 1999, 2000 SPRANS grant applications
    (n17)
  • 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

9
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

10
Key Elements
  • Leadership
  • Governance
  • Management
  • Stakeholder Involvement
  • Policy Support
  • Organizational Technical Strategies
  • Technical Support Coordination
  • Financial Support Management
  • Evaluation

11
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

12
Lessons Learned
  • Data are for sharing
  • Communication is critical
  • Change is hard
  • Let public health needs drive technology
  • Stay the course

13
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

14
Approach
  • Best used in early stages
  • Focused on planning and accountability
  • Integrated into teams project management
    strategy
  • Used to seek input from key stakeholders that
    affect the projects planning and early
    implementation stages

15
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

16
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

17
Questionnaire
18
Questionnaire
19
Integration Planning Matrix
20
  • All Kids Count
  • Public Health Informatics Institute
  • The Sourcebook Tool are available at
    www.phii.org

21
  • National Newborn Screening Genetics Resource
    Center
  • Information on MCHBs Initiative to Integrate
    Newborn Screening Systems is available at
  • http//genes-r-us.uthscsa.edu

22
Program Contact Deborah Linzer, MS Health
Resources Services Administration Maternal
Child Health Bureau 301-443-1080 dlinzer_at_hrsa.gov
http//mchb.hrsa.gov/
23
Newborn Screening Improves Saves Lives
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