Transcript Activities Related to Health and Disability Statistics in the UNECE Region and Globally Jennifer H.

Activities Related to Health
and Disability Statistics in
the UNECE Region and
Globally
Jennifer H. Madans for the
Washington Group and the
Budapest Initiative
SPECA Meeting, Paris, June 16, 2006
The Washington Group on
Disability Statistics
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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
SPECA Meeting, Paris, June 16, 2006
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.
SPECA Meeting, Paris, June 16, 2006
Preliminary work
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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
SPECA Meeting, Paris, June 16, 2006
Concepts for Measurement: ICF
Model
Health Condition
(disorder or disease)
Body Functions
& Structures
Activity
Environmental
Factors
Source: ICF, WHO, 2001
SPECA Meeting, Paris, June 16, 2006
Participation
Personal
Factors
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
SPECA Meeting, Paris, June 16, 2006
Equalization of opportunities
% Employed
90
Proportion (%)
 Seeks to identify
all those at
greater risk than
the general
population for
limitations in
activity or
participation
 Disability as a
demographic
60
30
0
Nondisabled
SPECA Meeting, Paris, June 16, 2006
Disabled
Potential sources of data on
disability
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National censuses
Specialized surveys
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Health or disability surveys
Other population surveys
Administrative data
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Registries
Medical and/or insurance records
SPECA Meeting, Paris, June 16, 2006
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
SPECA Meeting, Paris, June 16, 2006
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
SPECA Meeting, Paris, June 16, 2006
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
SPECA Meeting, Paris, June 16, 2006
WG draft questions for censuses
(short disability measure)
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Core Questions:
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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:
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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)?
SPECA Meeting, Paris, June 16, 2006
Standardized testing
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16 countries participating
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Cognitive tests in 12 countries
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Congo, Egypt, Gambia, India, Kenya, Lesotho,
Mauritius, Philippines, Uganda, Mexico, South Africa,
Vietnam
Field tests in 4 countries
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13 funded via World Bank grant, 3 self-funded
Gambia, Kenya, Vietnam, Sweden
Combined cognitive/field test in 3 countries
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Argentina, Brazil, Paraguay
SPECA Meeting, Paris, June 16, 2006
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
SPECA Meeting, Paris, June 16, 2006
Budapest Initiative
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Aim: to achieve internationally comparable
measurement of population health states
within the framework of official statistics.
Focus:
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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.
SPECA Meeting, Paris, June 16, 2006
Health as a Multidimensional
Construct and Cross-Population
Comparability
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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
SPECA Meeting, Paris, June 16, 2006
Accomplishments to date
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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
SPECA Meeting, Paris, June 16, 2006
Selected Domains
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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
SPECA Meeting, Paris, June 16, 2006
Current Activities
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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
SPECA Meeting, Paris, June 16, 2006
Next steps
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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
SPECA Meeting, Paris, June 16, 2006