The Framework for Integrated Child Health Information Systems

1
The Framework for Integrated Child Health
Information Systems

• Ellen Wild, MPH
• Public Health Informatics Institute

2
Presentation Overview

• The Framework for Integrated Information Systems
• History
• Principles, Core Functions Measures
• Findings
• Connections Community of Practice
• Whats a CoP
• Products
• Lessons Learned

3
Framework

• Provide guidance to states in the development of
  integrated child health information systems.
• Funded by HRSA/GSB
• Includes
• Principles - purpose and intent
• Core functions
• Performance measures to evaluate effectiveness in
  providing essential information

4
Approach

• Collaborative 3 year process
• Convened a Workgroup to draft the sections
• Review group provided comments
• Feasibility Survey
• Site Visits
• Pilot test of performance measures
• Final Recommendations of Workgroup

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Workgroup Members

• Newborn Dried Blood Spot Screening
• Newborn Hearing Screening
• Vital Records
• Immunization Registries
• Public Health Laboratories
• Private Physicians
• Parents

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Principles

• General purpose 1
• Security confidentiality 6
• Technology serving stakeholder needs 9
• Quality assurance evaluation 3
• Financing 1
• Total 20

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Core Functions

• Confidentiality security 1
• Establish maintain client records 3
• Service functionality 5
• Technical functionality 4
• Reports 3
• Total 16

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Performance Measures

• How well the integrated system supports the
  information needs of the participating programs
  (VR, IZ, NDBS, NHS)
• Combination of completeness and timeliness
  measures
• Feasible to measure on an on-going basis
• Sensitive to change over time
• Change must mean something (e.g., progress,
  problems)

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Establishing Records
PM 1A - Percent of newborns with a record in the
integrated child health information system
(ICHIS) PM 1B - Percent of records of live
births occurring in the jurisdiction that were
established within 0-2, 3-7, 8-14, 15-30, and gt30
days of birth
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Integrated Record
PM 2A - Percent of records that include data on
dried blood spot screening, hearing screening,
immunization, and vital registration PM 2B -
Percent of records that include data on the four
program elements (dried blood spot screening,
hearing screening, immunization, and vital
registration) within 90 days of birth
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Immunization
PM 3A - Percent of records with immunization
information available PM 3B - Percent of records
with immunization information available within 30
days of administration for children less than 6
years of age
12
Newborn Dried Blood Spot
PM 4A - Percent of records with newborn dried
blood spot screening information available PM 4B
- Percent of records with newborn dried blood
spot screening status available within two days
of receipt of report from laboratory
13
Newborn Hearing Screening
PM 5A - Percent of records with newborn hearing
screening results available PM 5B - Percent of
records with newborn hearing screening results
available within specified time intervals for
screening 0-2, 3-7, 8-14, 15-30, gt30 days of
birth
14
Newborn Hearing Screening Follow-up
PM 6 - Percent of children who did not pass
initial hearing screening AND who are enrolled
in/referred to an early intervention or other
appropriate program OR found not to have hearing
loss by 6 months of age
15
Newborn Dried Blood Spot Screening Follow-up
PM 7A - Percent of children with out-of-range
congenital hypothyroidism screening results who
have been diagnosed AND are under appropriate
management by 21 days of birth PM 7B - Percent
of children with hemoglobin screening results
suggesting either Sickle Cell Anemia, Sickle C
disease or Beta Thalassemia, who have been
evaluated and are under appropriate management
by 2 months of age
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Findings

• None of the states was currently able to report
  on all measures - all said they would in the
  future.
• Difficult to come up with measures intended to
  document impact of integrating systems as
  distinct from the impact of the individual
  programs.
• Collaborative approach is difficult but lends
  credibility.
• Measures will continue to evolve with experience
  not complete set.

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Communities of Practice

• Groups of people who share a concern, a set of
  problems or a passion about a topic and who
  deepen their knowledge and expertise in this area
  by interacting on an ongoing basis.
• Cultivating communities - knowledge management
  strategy.
• Members engage in collaborative problem solving,
  share best practices and lessons learned.

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Its not like baking a cake

• CoPs have been success when dealing with complex,
  issues where there is no simple formula for
  success, like CHIS.
• Tacit knowledge the stuff each of us knows but
  cant explain easily needs to be elicited.
  (ie. best practices).
• Sharing experiences, the tacit knowledge, can
  help achieve your goals.

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• 18 state and local public health departments
  members.
• Funded by the HRSA/MCHB Genetic Services Branch.
• Started in June 2004 has funding until June
  2006.

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Connections Member Agencies
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Connections Framework

• Monthly Conference Calls
• 2 Webcasts
• Interactive website ConnectionsZone
• Three community-wide face-to-face meetings within
  the 2 year period
• Bi-monthly e-Newsletters
• 2 workgroups to focus on specific issues

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Our Workgroup Approach

• Convene small workgroups to focus on specific
  issues identified by the members.
• Workgroups include representatives from
  Connections member-sites plus invited experts.
• Goal is to develop quality products that are
  practical and useful to integrated information
  systems developers.

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Unique Records Workgroup

• Addresses issues around matching, merging or
  linking disparate records for an individual.
• 12 members including Connections members, federal
  agency representatives and other invited experts.
• Timeline Group began in Feb, met in March and
  will produce a product by February 2006.

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Unique Record Workgroup Product

• Product A portfolio that contains
• Overview of Matching, Linking and Merging
  Concepts
• Categorization of approaches to identifying
  unique individuals (e.g., MPI)
• Common Software Architecture descriptions
• Matching/Linking methodologies

25
URW Product Cont.

• A Project Questionnaire
• Metrics and Evaluation
• Self-Assessment Checklist to manage and monitor
  deduplication processes and impact
• Glossary

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CoP Lessons Learned

• Enterprise level systems change, such as
  integrating CHIS, requires collaboration.
• Communities of Practice can strengthen
  collaboration.
• They can be productive
• Generate knowledge products
• Build relationships

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CoP Lessons Learned Cont.

• Dedicated resources staff and money.
• CoPs are organic and need to be nurtured
• Master facilitating session
• Understanding the issues members are facing
• Cultivating relationships among members, building
  trust

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Contact Information

• Ellen Wild
• 404-687-5607
• www.phii.org
• ewild_at_taskforce.org