Activities Related to Health and Disability Statistics in the UNECE Region and Globally

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Activities Related to Health and Disability
Statistics in the UNECE Region and Globally

• Jennifer H. Madans for the Washington Group and
  the Budapest Initiative

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The Washington Group on Disability Statistics

• In June of 2001, the UN International Seminar on
  the Measurement of Disability recommended the
  development of principles and standard forms for
  global indicators of disability to be used in
  censuses
• There was a broad consensus on the need for
  population based measures of disability for
  country use and for international comparisons

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Washington Group Purpose

• The promotion and co-ordination of international
  co-operation in the area of health statistics by
  focusing on disability measures suitable for
  censuses and national surveys which will provide
  basic necessary information on disability
  throughout the world.

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Preliminary work

• Clarify the purpose of data collection in order
  to identify appropriate measures
• Understand choices being made when time, expenses
  and respondent burden limit number of questions

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Concepts for Measurement ICF Model
Health Condition (disorder or disease)
Body Functions Structures
Activity
Participation
Environmental Factors
Personal Factors
Source ICF, WHO, 2001
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Selection of purpose/s

• Major classes of purposes at aggregate level
• Service Provision
• Monitoring functioning in the population
• Assess equalization of opportunities
• Criteria for selecting purpose
• Relevance
• Feasibility

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Equalization of opportunities
Employed

• Seeks to identify all those at greater risk than
  the general population for limitations in
  activity or participation
• Disability as a demographic

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Potential sources of data on disability

• National censuses
• Specialized surveys
• Health or disability surveys
• Other population surveys
• Administrative data
• Registries
• Medical and/or insurance records

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Censuses

• Strengths
• Available in most countries
• Excellent population coverage
• Availability of small area data
• Periodic, regular data collection

• Limitations
• Very limited number of questions
• Lack of detailed data on characteristics of
  interest, therefore may miss important subgroups

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Surveys

• Strengths
• Can obtain more detailed data compared to a
  census
• Good population coverage (can target population
  of interest)

• Limitations
• Costly
• Labor intensive
• Many countries do not have the resources for such
  surveys

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Administrative data

• Strengths
• Access to very detailed medical data

• Limitations
• Not available in many countries
• Coverage of population may be limited
• Coverage governed by programmatic definitions
• Comparability of data is problematic since data
  are specific to country and context

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WG draft questions for censuses (short
disability measure)

• Core Questions
• 1. Do you have difficulty seeing even if wearing
  glasses?
• 2. Do you have difficulty hearing even if using a
  hearing aid?
• 3. Do you have difficulty walking or climbing
  stairs?
• 4. Do you have difficulty remembering or
  concentrating?
• Additional Questions
• 5. Do you have difficulty with (self-care such
  as) washing all over or dressing?
• 6. Because of a physical, mental, or emotional
  health condition, do you have difficulty
  communicating (for example understanding others
  or others understanding you)?

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Standardized testing

• 16 countries participating
• 13 funded via World Bank grant, 3 self-funded
• Cognitive tests in 12 countries
• Congo, Egypt, Gambia, India, Kenya, Lesotho,
  Mauritius, Philippines, Uganda, Mexico, South
  Africa, Vietnam
• Field tests in 4 countries
• Gambia, Kenya, Vietnam, Sweden
• Combined cognitive/field test in 3 countries
• Argentina, Brazil, Paraguay

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Budapest Initiative UNECE/WHO/Eurostat Task
Force on Measurement of Health Status

• May 2004, Steering Group and Working Group were
  established to develop a new common question set
  in coordination with existing groups such as the
  Eurostat Group on HIS and the Washington Group

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Budapest Initiative

• Aim to achieve internationally comparable
  measurement of population health states within
  the framework of official statistics.
• Focus
• The development of common question set to measure
  health state in its multiple dimensions.
• Not focused on providing a full statistical
  picture of population health, its determinants,
  and consequences.

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Health as a Multidimensional Construct and
Cross-Population Comparability

• Clarify how health is being defined --
  distinction between health status and health
  state
• Distinguish health states from determinants and
  consequences
• Health states are attributes of individuals
• Multi-dimensional approach to health state
  description
• ICF as the framework for measuring health status
• Comparability of measurement for health states

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Accomplishments to date

• Agreed on a common basic terminology
• Determined criteria and selected health domains
• Identified a draft set of questions and a
  cognitive test plan for the domains of pain,
  cognition, affect and anxiety
• Questions are being included in the Eurostat
  health module test

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Selected Domains

• Physical functioning - mobility
• Physical functioning dexterity
• Vitality/Fatigue
• Affect
• Anxiety
• Vision
• Hearing
• Pain and Discomfort
• Cognition
• Memory and concentration
• Thinking and problem solving
• Social relationships

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Current Activities

• Finalize questions for the remaining domains
  mobility, vision, hearing, vitality, social
  relationships
• Develop cognitive testing protocols
• Develop a plan for the analysis of existing data
  sets that include questions similar to those
  developed

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Next steps

• Fall 2006 Review results of cognitive tests and
  empirical analyses
• Winter 2006/2007 Select final question set
• Spring 2007 Begin to include question set in
  national data collections but continue to review
  question performance