SPECA Meeting, Paris, June 16, 2006

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

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

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 Participation

Environmental Factors

Personal Factors

Source: ICF, WHO, 2001

SPECA Meeting, Paris, June 16, 2006

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

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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6 0

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Pro

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N o n d is a b le d D is a b le d

% Employed

SPECA Meeting, Paris, June 16, 2006

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

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)

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)?

SPECA Meeting, Paris, June 16, 2006

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

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

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.

SPECA Meeting, Paris, June 16, 2006

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

SPECA Meeting, Paris, June 16, 2006

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

SPECA Meeting, Paris, June 16, 2006

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

SPECA Meeting, Paris, June 16, 2006

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

SPECA Meeting, Paris, June 16, 2006

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