Data in Action: Involving Grassroots Leaders

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Data in Action Involving Grassroots Leaders

• Presentation by Kay Johnson

June 2000 Syracuse, NY
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Experience

• Childrens Defense Fund (CDF) Databook
• CDF Adolescent Pregnancy ChildWatch
• March of Dimes (MOD)
• Perinatal MCH Program Survey
• Starting Points early childhood initiatives
• Selecting local performance indicators

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CDF - MCH Databook

• Data with policy analysis
• State and city level data
• ranking for comparison
• time trends and basic arrays
• no complex calculations
• Federal statistics
• PROCESS prenatal care use, immunization
• OUTCOME infant mortality, low birthweight

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CDF - MCH Databook Lessons

• Data with policy analysis
• Local media interest in state comparisons
• Having local advocates to report on local needs
  and recommendations mattered
• Federal statistics considered reliable

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CDF - Child Watch

• Womens civic organizations
• Junior League, National Coalition of 100 Black
  Women, Bnai Brith Women
• Adolescent Pregnancy Child Watch
• Basic training workbook and workshop
• Definitions for terms
• Data sources
• Practical exercises application

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Child Watch - Lessons

• Educated volunteers did local assessments
• Training was basic but thorough
• Ongoing technical assistance was available by
  telephone
• Data collection
• Analysis
• Used as tool for mobilization
• Data helped in consensus development

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MOD - Complex projects

• Local chapter data efforts
• Collaboration with CDC (sophisticated research
  design)
• Data collection with USCF (process data)
• National efforts with local data
• Prenatal care census design with Alan Guttmacher
  Institute
• Training on use birth defects surveillance

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MOD - Capacity building

• StatBook
• Modeled after CDF data book
• Provides more context
• Perinatal Data Resource Center
• Offer ongoing training
• Training at annual meeting
• Special topic workshops over time

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March of Dimes - Lessons

• Resource center technical assistance key
• Local chapters brought questions
• Chapters alone didnt justify resource center
• Tools for to larger professional audience

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Perinatal Quality Improvement

• Survey of state MCH Program staff
• Directors
• Perinatal staff
• Questions included
• What are state-level uses of national data
  resources?
• What data systems are used for quality
  improvement efforts?

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Perinatal QI Survey - Lessons

• Frequent reliance on
• CDC data sets and resources
• CDF and MOD data resources
• Few use PRAMS or FIMR for performance monitoring
  or quality improvement
• Less familiar with
• Vermont- Oxford Network (VON)
• National Perinatal Information Center

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Starting Points - NEW REPORT!

• E-Childhood
• Using Data and Information Technologies to
  Advance the Early Childhood Agenda
• Sara Watson and Barbara Squires
• www.financeproject.org
• Describes how Starting Points sites and others
  have used new data and information technologies
  to improve systems of early education and care.

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Starting Points Data Lessons

• Coordinated data gathering and child advocacy
• Just in time data
• Media campaigns to capture public attention
• Cost-benefit analysis
• Connecting and empowering people
• Focusing on results
• Cost accounting/decision support software
• Intermediaries for data collection /
  administration
• Data sharing among agencies

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Performance Monitoring and Results-based
Accountability

• Professionals versus Community
• The biggest match held in the public policy arena
  in decades.
• OR
• HOW TO AVOID A MATCH

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Results-based Performance Monitoring in
Communities

• Ongoing, community-based process
• Indicators to measure inputs, process, and
  outcomes
• Collect and analyze data on indicators
• Making results available for decisions

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Starting Points - Monitoring

• Vermont
• reports on state and local progress on selected
  indicators (data to school district level)
• data at the township level available on the
  Internet for local analyses.
• Pittsburgh
• Family resource centers defined common
  performance measures and collect common data in
  order to show their combined impact in a joint
  report.

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Raise the Flag , But Then Do Analysis

• It is important to note that indicators serve
  as a red flag good indicators merely provide a
  sense of whether expected results are being
  achieved.

They do not answer questions about why
Source Harvard Family Research Project
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Performance Measures

• Quantifiable and defined.
• Supported by data routinely collected.
• Related to desired results/outcomes and to
  conditions that are severe or widespread.
• Measures of inputs, process, and outcomes.
• Developed in a process that engages
  professionals and consumers.
• Based on consensus about priorities.
• Consistent with related objectives.

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Performance Monitoring Challenges

• Tired and maybe untrue methods
• Much confusion about terms
• Often using inappropriate indicators
• Not enough community involvement
• Need attention to different levels in systems of
  care and communities

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• Title V MCH programs are responsible for total
  cohort accountability through
• policy development,
• assessment, and
• assurance.

Perinatal networks are key to network guidelines,
performance / process evaluation, and network
data..
Health systems health plans lead in provider
relationships, administrative data, and
performance assessment.
Providers are key to clinical practice
guidelines, and evidence-based practice.
Patients need useful indicators and reports about
perinatal care based on all of the above.
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Friedman Model as a Guide
Quality
Quantity
Effort
How much?
How well?
Best possible results?
What results?
Impact
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Child Health Outcomes

• We can help communities improve the
  well-being and health outcomes for their children.