1. 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

2. 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

3. 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.

4. 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

5. SPECA Meeting, Paris, June 16, 2006 Concepts for Measurement: ICF Model Health Condition (disorder or disease) Body Functions & Structures ActivityParticipation Environmental Factors Personal Factors Source: ICF, WHO, 2001

6. 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

7. 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 % Employed

8. 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

9. 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

10. 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

11. 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

12. 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)?

13. 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

14. 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

15. 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.

16. 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

17. 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

18. 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

19. 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

20. 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