Integration of NBS with other MCH Systems: A Sourcebook

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Integration of NBS with other MCH Systems A
Sourcebook Tool for Assessment PlanningEHDI
ConferenceFebruary 2004Deborah 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.

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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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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
  (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

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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 teams project management
  strategy
• Used to seek input from key stakeholders that
  affect the projects 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

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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

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

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• National Newborn Screening Genetics Resource
  Center
• Information on MCHBs 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 Administration Maternal
Child Health Bureau 301-443-1080 dlinzer_at_hrsa.gov
http//mchb.hrsa.gov/
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Newborn Screening Improves Saves Lives