Accelerating Technology Diffusion, Leveraging Resources, and Improving Informatics Practice

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Integrating child health information systems
All Kids Count survey results
Nicole Fehrenbach NAPHIT Annual Meeting
Atlanta, GA May 27, 2004
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Objectives of presentation
Introduction

• Provide a short synopsis of who we are
• Briefly describe background and context for the
  All Kids Count survey
• Present the methodology
• Describe and interpret findings on the
  development of integrated child health
  information systems among state and local health
  departments
• Relevance to and role for NAPHIT

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Public Health Informatics Institute

• Through collaboration, innovation and action, we
  help public health practitioners strategically
  apply and manage information technology.
• We provide service, educate stakeholders, inform
  policy and conduct research.

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All Kids Count background

• Funded by The Robert Wood Johnson Foundation over
  12 years
• Phase 1 (1992-1997) 24 grants to develop
  immunization registries
• Phase 2 (1998-2000) 16 implementation grants to
  advance immunization registries to fully
  operational status
• Phase 3 (2000-2004) to promote integrated child
  health information systems (CHIS)
• Public Health Informatics Institute established
  in 2001 with RWJF fundingAKC now part of PHII

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Our approach

• As a non-profit, non-governmental organization
  we
• Act as a neutral convener of stakeholders
• Provide a field-oriented perspective
• Use a collaborative, participatory approach
• Stimulate new ideas and innovative
  solutionschallenge the status quo
• Advocate/educate partners

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Government IT spending Billions 2002
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Context National level

• E-government Act of 2002
• Consolidated health informatics
• E-vital (Vital Records Re-engineering)
• Clinger-Cohen Act of 1996
• National Health Information Infrastructure
  (NHII)
• Public Health Information Network (PHIN)
• Medicaid Information Technology Architecture
  Initiative (MITA)

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Why do we need integrated CHIS?

• Receive preventive or therapeutic services in a
  timely manner
• Low immunization coverage rates correlated with
  insufficient screening for lead and anemia
• Multiple PH programs focus on the same target
  population w/o coordination of services
  outreach
• Population-based information to identify at-risk
  children

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Goals of integrated CHIS

• To provide all appropriate information to
  patients/families, providers, and programs
• Complete, accurate timely information
  improved service delivery and outcomes
• Integration - providing a range of information to
  the end user in a simple, comprehensive format
• Integration relates to the end user, not to the
  background machinery

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Targeted programs/systems for integration

• 1st tier
• Immunizations (immunization registries)
• Newborn dried blood spot (NDBS) screening
• Early hearing detection and intervention (EHDI)
• Vital registration
• 2nd tier
• WIC
• Lead screening
• Medicaid/EPSDT
• Birth defects surveillance

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Why these?

• Top 4 areas chosen share characteristics
• Recommended for all infants/children
• Carried out/begin in newborn period
• Time-sensitive
• Primarily delivered in private sector but have
  strong public sector component
• Mandated in most/all states

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And thats where the is

• Newborn Screening Task Force
• Genetic Services Branch\HRSA 21 states funded
• Early Hearing Detection Intervention
• EHDI\CDC 32 states and territories
• CDC NIP 317 Funds

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Why do a survey?

• It aint what you dont know that gets you
• into trouble. Its what you know for sure
• that just aint so.
• Mark Twain

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Methodology Sample identification

• Non-probability sample identification
• All Kids Count Connections members
• HRSA/GSB SPRANS grantees
• AIRA survey respondents subset
• CDC/NIP 2000 survey respondents
• 22 out of the 23 participated.
• 18 integrating.

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Key Findings

• Results
• What is being integrated?
• Why?
• How?
• Organizational
• Financial
• Technical

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Why integrate?

• Top reasons
• 1. Improve child health
• 2. Eliminate or reduce deduplication process
• 3. Improve data quality
• 4. Funding available
• 5. Stakeholder desire
• Only 3 cited a State-level IT plan.

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Planning process

• Median planning began 4 years ago
• Range 1 12 years ago
• 8 have a strategic plan that specifies
  integration
• 12 said they completed a requirements definition
  process

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Who leads the effort?
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Whose on the team?

• Extraordinarily hard question to answer
• FTEs range 2-15
• Individuals 4 to 100
• Internal PH Types
• 12 Project manager
• 12 Program manager or epidemiologist
• 10 Director or Chief
• 10 Database manager/analyst
• 9 Business analyst

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Financing

• Budget placement separate or categorical?
• 9/18 separate budgets
• What are the grant/contract/appropriations?
• How much for integration effort in FY 2003?
• 85K - 27million
• Median 482,500

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Funding sources
Other CDC (5)
NIP/317 funds (7)
HRSA/MCH Block grants (7)
HRSA/SSDI grants (8)
CDC/EHDI grants (9)
HRSA EHDI (7)
State budget allocations (10)
HRSA/GSB SPRANS grants (13)
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Technical Approach
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Who has access and how?
100 Web-based access
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Partners provide electronic data
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Strengths and Challenges
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Strengths Limitations

• Convenience sample
• Excellent response rate (22/23)
• Open-ended questions, qualitative
• Collected stories from groups
• Broad exploration no intense focus on one area

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Conclusions

• Integration activities are occurring
• Variation in approaches but striking consistency
  with targeted programs
• Organizational change among those that started
  earlier separate budgets, identified project
  leaders
• There is a need for articulating sensible
  approaches may not want to have 50 3000
  approaches

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Relevance to NAPHIT

• Ask the question is IT the answer? What is the
  problem?
• Project management/ project methodology
  provide technical assistance as an organization
• Assurance with standards

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Relevance to NAPHIT

• Importance of collaboration btwn IT Programs
• Need for strategic planning for integration
  internally and at the national level
• Need to identify the commonalities what are
  the business processes of public health
• Be a voice for coherent, non-categorical funding

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Thank You

• Nicole Fehrenbach
• Presentation at www.naphit.org
• Email nfehrenbach_at_phii.org
• www.phii.org
• Ph 404-687-5622