1. United NationsUnited Nations Economic Commission for Europe Statistical Division Population Unit International initiatives on health and disability statistics Vitalija Gaučaitė Wittich 51 st CSoD session, 12 February 2013

2. Vitalija Gaucaite Wittich- UNECEPopulation Unit Slide 2 Current International Initiatives Washington Group on Disability Statistics (2001) Budapest Initiative on the Measurement of Health Status (2005) Model Disability Survey initiative (2012)

3. Vitalija Gaucaite Wittich- UNECEPopulation Unit Slide 3 Model Disability Survey (WHO/WB initiative) Prompted by the UN Convention on the Rights of Persons with Disabilities (CRPD, art. 31) Aims to produce a standardised survey instrument to gather data that is: Internationally comparable Allows to monitor national & global implementation of CRPD Needs to built on existing experience (Washington Group, Budapest Initiative)

4. Vitalija Gaucaite Wittich- UNECEPopulation Unit Slide 4 Washington Group on Disability Statistics The main purpose is the promotion and co-ordination of international co-operation in the area of health statistics focusing on disability measures suitable for censuses and national surveys A question set about limitations in basic activity functioning for use in national Censuses Intends to compare levels of participation in employment, education, or family life for those with disability versus those without disability (social inclusion) City Group – based on voluntary participation of statisticians across the world working on health statistics

5. Vitalija Gaucaite Wittich- UNECEPopulation Unit Slide 5 Budapest Initiative on the Measurement of Health Status 2004: Joint UNECE/WHO/Eurostat meeting on the Measurement of Health Status Broad consensus on the need for multiple indicators to provide a full statistical picture of population health, both for individual country use and for international comparisons; and the immediate need for an indicator of health state Task Force created by CES Bureau in October 2004 with the same Chairperson as Washington Group on Disability statistics The first meeting held in Budapest in November 2005; since then known as the Budapest Initiative (BI)

6. Vitalija Gaucaite Wittich- UNECEPopulation Unit Slide 6 Budapest Initiative on the Measurement of Health Status Purpose: To develop a new common instrument to measure health state suitable for inclusion in national interview surveys to provide basic necessary information on population health Objectives: To develop a question set to assess overall health state through a number of domains of functioning To describe trends in health over time within a country, across subgroups of a population, and across countries To do so in the framework of official national statistical systems

7. Vitalija Gaucaite Wittich- UNECEPopulation Unit Slide 7 Budapest Initiative on the Measurement of Health Status Guiding Principles for the Question Set: Measure the health states of individuals Operationalize health state as functional ability Focus on capacity rather than performance Measure across a parsimonious number of health domains, capturing the most variation in health Meet high standards of validity and international comparability Simple and clear, and easily translated into many languages

8. Vitalija Gaucaite Wittich- UNECEPopulation Unit Slide 8 Health Status and Health States Health states (capacities) Determinants of health Genetic contribution Lifestyle/behaviour Death Physical environment Physiological risk factors and risk markers Diseases, symptoms and injuries Domain 1 Domain2 N2.... HEALTH STATUS DomainN1 Economic environment Social environment Physiological risk factors and risk markers Quality of life Wellbeing Health State: an individuals levels of functioning within a set of health domains

9. Vitalija Gaucaite Wittich- UNECEPopulation Unit Slide 9 Budapest Initiative on the Measurement of Health Status Domains for BI Questions: Vision Hearing Walking / Mobility Cognition Affect Pain and fatigue Upper body (optional M1/incl.M2) Communication (optional M1/incl.M2)

10. Vitalija Gaucaite Wittich- UNECEPopulation Unit Slide 10 Budapest Initiative on the Measurement of Health Status First version of survey module (2005-2006) Tested in 2006 in 4 countries: Australia, Canada, Italy, U.S. Outcome: BI-M1 question set, endorsed by CES in 2007 Revised version of survey module (2008-2010) Developed in cooperation with Washington Group Three rounds of cognitive and field testing in 2008-2009 (in cooperation with WG and UNESCAP) Outcome: revised survey module finalized in 2010 and endorsed by CES Bureau in 2011

11. Vitalija Gaucaite Wittich- UNECEPopulation Unit Slide 11 Thank you Available on UNECE website as electronic publication: Survey Module for Measuring Health State - Developed by the Budapest Initiative Task Force on Measurement of Health Status http://www.unece.org/publication/survey_module_measuring_health_state.html