Data in Action: Making Change Happen in Challenging Times

1
Data in Action Making Change Happen in
Challenging Times

• Presentation by
• Kay Johnson

Translating Research into Practice Making Change
Happen Chicago, April 2002
2
Experience

• Reporting on trends in MCH
• Childrens Defense Fund data books reports
• March of Dimes (MOD) policy reports
• Monitoring policies programs
• Medicaid and other finance policies
• State program surveys home visiting, EPSDT,
  newborn screening, oral health, teen pregnancy,
  early childhood mental health, etc.
• Major analysis of MCH policy politics between
  1977-1997

3
Presentation Overview

• Present basic concepts on use of data in policy
  process
• Review examples of using data in policy process
• Propose areas data are needed
• Discuss why data are not neutral

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Why dont good ideas get adopted?

• Getting issues onto the governmental agenda and
  successfully making change

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Source Johnson and Little, 1999
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Using Evidence to Advance PolicyA 2x2 approach
Political Will
-

Evidence

E PW
E PW-
-
E- PW
E- PW-
Source Kay Johnson, Robert Wood Johnson
Foundation, November 1995.
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Three Factors in Policy
Political will
Social strategy
Knowledge
Source Richmond and Wise, 1979
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Issues on the Government Agenda
Policy stream

• Adapted from Kingdon, 1985 McDonough, 2000.

Political Stream
9
Didnt they read my article?

• Examples of how messages may be heard and
  translated by media and policymakers

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CDF Immunization Report

• National data show that immunization rates for
  children ages 1-4 declined between 1980-1985.
• Funding cuts, combined with soaring vaccine
  prices, led to reduced public health efforts to
  immunize children.
• The CDC stopped publishing and collecting data.
• Parent complacency contributed, but parents
  refusal to vaccinate children is not the cause.

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Headlines on Immunization

• Vaccine Costs Lead to Lower Childhood
  Immunization Rates
• Wall Street Journal
• Child Advocates Blame Administration Policies for
  Delayed Immunizations
• Washington Post
• Immunization Program Fails to Immunize Youngest
  Children
• New York Times
• SHOTS FOR TOTS (with graphic)
• USA Today

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Medicaid Prenatal Expansions

• A study, including all Medicaid-eligible women
  (enrolled and not enrolled), found that our
  states Medicaid expansions for pregnant women
  did not improve birth outcomes.
• Among pregnant women who did enroll in Medicaid
  for prenatal care, low birth weight and infant
  mortality rates were reduced.
• Did not investigate why half of the women did not
  enroll.
• Do not know about the quality or quantity of
  prenatal care received .

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Headlines on Medicaid Prenatal

• Infant Mortality the real causes are not medical
• Wall Street Journal
• Prenatal Care Program Has No Effect
• Boston Globe
• State Medicaid Expansion Fails to Improve Infant
  Health
• New York Times
• no coverage in USA Today

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What conclusions can policy makers draw from the
data?

• Rates improving
• Rates worsening

• Our programs are working, we need more money to
  do more of same.
• Our programs have done the job this is no longer
  priority problem, our funding could be cut.
• Our programs are not working alternative
  strategies are needed.
• Our programs are effective but are too small to
  affect whole community.

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Those people in power are impossible!

• Framing issues to fit the times
• (as the proverb goes
• may you live in interesting times)

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Reframing Reagan to Gingrich

• Issue definition has the potential for
  mobilizing the previously disinterested
  Baumgartner and Jones, 1993
• Family values revised paradigm
• Does it take a village or just a "good" family?
• Big government versus family responsibility

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Families, Babies, and Medicaid
Over 1.4 million infants had Medicaid as a source
of health insurance.
Nearly 1 million (68) of these infants lived in
families whose head of household was working.
Source Kay Johnson. Families, Babies, and
Medicaid Special Report for the Speaker of the
House. White Plains, NY March of Dimes. 1995 (
Based on EBRI analysis of CPS 1994 data.)
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Framing Child Health in a Family Values
Perspective

• Their parents work hard but all their hard work
  doesnt buy their children the protection they
  deserve The legislation imposes no new
  governmental mandates. It does not substitute
  for family values. Senator Kennedy, describing
  childrens health insurance proposal, 1996

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Use Inside-Outside Strategy

• Childrens Defense Fund and CDC team advanced
  immunization financing policies
• Parents and MCHB team advanced definition for
  CSHCN
• March of Dimes and CDC team advanced folic acid
  policy and birth defects surveillance
• Governors and Congress team advanced welfare
  reform

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I want my research to be relevant...

• Areas of inquiry that might bear fruit in these
  times

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Data Use Triangle
Source Bill Sappenfield, CityMatCH
Data use Analysis
Planning Programs
Politics Policy
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New, Emerging, and Hot Topics

• Abstinence
• Dental/oral health
• Developmental services
• Early childhood mental health
• Genetics/birth defects/
• newborn screening
• Pregnancy options/adoptions
• Welfare transitions

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Medicaid

• Enrollment trends
• Spending on prevention
• Benefits covered under managed care
• Benefits received

• Compared to eligibility
• Screening other preventive services
• Contract coverage or referral patterns
• Utilization studies
• oral health
• mental health
• developmental services

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EPSDT Quality Study - MI Advocates
Percentage of Michigan children enrolled in
Medicaid managed care plans who received EPSDT,
by service component and age. (Ages 0-6 years)
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SCHIP

• Enrollment trends
• Outreach
• Benefits covered
• Benefits received

• Compared to eligibility
• Methods compared
• Compared to standard
• Utilization studies
• preventive, well child
• special health needs
• oral health
• mental health
• developmental services

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System Performance

• Measure content quality
• e.g., Korenbrot, AHRQ studies
• Study various characteristics of access
• e.g., Starfield, Aday,
• Use right tools for different spheres
• family, provider, system, population
• Study system dimensions barriers
• e.g., Handler, Guyer, Brown, Johnson

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Measure Content Quality of Care

• 1988 - Expert Panel recommends more study of
  content of prenatal care
• 1990s - handful of studies look at questions
• 2000 - no significant progress in changing
  practice or strategies

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Characteristics of Access
Source Johnson, 1999 based on work of Starfield
Pechansky et al.
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Use right tools for different spheres

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

Perinatal networks are key to network
guide-lines, performance evaluation.
Health systems health plans lead in
administrative data performance assessment.
Providers are key to clinical practice
guidelines, evidence-based practice, and
benchmarking.
Patients need useful indicators and reports about
perinatal care based on all of the above.
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Study system dimensions barriers
Source Toward Improving the Outcome of
Pregnancy The 90s and beyond.
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But the Data Prove...

• The fallacy of data objectivity and neutrality

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Data definition is misleading

• Datum a thing given or granted, something know
  or assumed as a fact and made the basis of
  reasoning or calculation
• Data have never simply been a given.
• Data reflect decisions made by people and
  institutions with underlying values/beliefs.

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Data Paradigms, Politics, Policy
Despite being fraught with political
considerations, the making of public health data
usually is cast in apolitical terms
however, conscious and unconscious decisions
about what types of data to include or exclude
are based on prevailing theories of disease
causality and the links between these theories
and current political concerns are obscured by
the claim that scientific knowledge is
objective and neutral. Exposing this
fallacy is important.
Source Nancy Krieger, 1992.
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Beyond Myth, Toward Fact

• Families don't seek care because they don't value
  it.
• Patients are receiving appropriate, quality care.
  
• More providers would participate in Medicaid if
  payment levels were higher.
• Using more mid-level practitioners (or outreach
  workers) is the answer to access problems.
• Having an insurance card resolves access
  barriers.
• We can change the world, or population health
  status, through health promotion and health
  education.

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Take - home messages

• Translate and communicate
• Use data for information
• Frame issues that fit with current times
• Aim for answerable, relevant questions
• Work collaboratively
• Dont forget systems level
• and what you see depends on how the world turns.