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«Report on a WHO Workshop: Minimum Data Set Version 1.0 on Ageing and Adult Mortality Data in sub-Saharan Africa Pretoria, South Africa 12 - 14 ...»

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Information Needs for Research, Policy and Action on Ageing and Older Adults

Report on a WHO Workshop:

Minimum Data Set Version 1.0 on Ageing and

Adult Mortality Data in sub-Saharan Africa

Pretoria, South Africa

12 - 14 February 2003

Prepared by

Paul Kowal, P.V. Chalapati Rao and Colin Mathers

Evidence and Information for Policy

World Health Organization

U.S. National Institute on Aging

2 2003 Pretoria MDS Project Workshop Table of Contents Executive Summary

1. Introduction

1.1 Evidence to inform policy formulation on adult health and ageing in Africa............... 9

1.2. Aims and Objectives of the Workshop

1.3. MDS Project Background

2. Health and health-related data

2.1 Evidence for health policy

Clearly Defined Quantities of Interest

Validity and Reliability

Comparability

Data Audit Trail

Consultation with data providers

2.2 Global burden of disease in ageing populations

2.3 National burden of disease analyses

3. MDS Version 1.0

3.1. Ghana

3.2.South Africa

5.3 United Republic of Tanzania

3.4 Zimbabwe

3.5. MDS Version 1.0 – combined countries

4. Ongoing Data Collection Efforts –

4.1 Comparable measurement of health status

4.2 The World Health Survey (WHS)

Objectives of the WHS

Implementation of the WHS

Health state measurement module

Sample size

Interaction with Countries and HIS

Logistical problems

Longitudinal add-on to WHS surveys

4.3 INDEPTH

Tanzania Adult Morbidity and Mortality Project

5. Adult mortality data sources and data collection systems

5.1. Background

5.2 Mortality data sources and access

Census data collections

Demographic and Health Surveys (DHS)

2003 Pretoria MDS Project Workshop 3 Demographic Surveillance Sites

Vital Registration Systems

5.3 Issues in the implementation and improvement of national death registration systems

Political will

Organizational issues

System design

Legal framework

Capacity building and quality control

Public Awareness

Practical Classification

5.4 Sample Registration Systems (SRS)

Scope and benefits of sampling

Technical aspects of sampling and registration

Limitations of sampling

Verbal Autopsy

5.5 Recommendations for improving death registration systems

6. Hospital Data

Recommendations for data collection in hospitals

7. Discussion and conclusions

7.1 Discussion of future directions

7.2 The World Health Survey and related activities

7.3 Improving national mortality data

7.5 Conclusions

REFERENCES

Annex 1. List of Participants

Annex 2. Minimum Data Set Project Indicators for MDS Version 1.

0, submitted and known data by country

Annex 3. Towards an MDS Dissemination and Use Strategy – Draft

4 2003 Pretoria MDS Project Workshop

–  –  –

Acknowledgements The workshop was convened on behalf of the World Health Organization’s Minimum Data Set Project on Ageing and Older Adults in sub-Saharan Africa, by South African MDS Project collaborators Monica Ferreira (Institute of Ageing in Africa, University of Cape Town) and Craig Schwabe (Geographic Information Systems Centre (GIS), Human Sciences Research Council). It was hosted by the GIS Centre team at the Human Sciences Research Council Building in Pretoria.

Transportation and logistical arrangements for the workshop were facilitated by Karen Peachey of HelpAge International’s Africa Regional Development Centre in Nairobi, Kenya;

Pricilla Brussel of the HSRC’s GIS Centre in Pretoria; and the WHO Country Office.

The workshop was co-ordinated by WHO Project Co-ordinators Paul Kowal and Chalapati Rao (Epidemiology and Burden of Disease unit). Workshop sessions were chaired by Mounkaila Abdou (WHO), Debbie Bradshaw (South Africa), Martinho Dgedge (Mozambique), Monica Ferreira (South Africa), Abdul Jetha (Tanzania), Joshua Katiyo (Zimbabwe), Colin Mathers (WHO) and N.N.N. Nsowah-Nuamah (Ghana). Craig Schwabe (South Africa) was the rapporteur.

Thirty-three persons participated in the workshop, and their contribution both prior to and during the workshop is gratefully acknowledged. A list of the participants is given in Appendix 1. Professor Monica Ferreira also contributed to the preparation of this Workshop Report.

Financial support for the MDS Project and the workshop has been provided under a grant from the Behavioral and Social Research Program of the U.S. National Institute on Aging through an Interagency Agreement with the World Health Organization. The Global Burden of Disease in Aging Populations project is also supported by a grant from the National Institute on Aging (Research Grant No. PO1 AG17625-01).

Note:

The boundaries and names shown and the designations used on maps in this report do not imply the expression of any opinion whatsoever on the part of the World Health Organization concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted lines on maps represent approximate border lines for which there may not yet be full agreement.





Maps © WHO 2003. All rights reserved.

6 2003 Pretoria MDS Project Workshop List of Terms

–  –  –

Executive Summary The WHO workshop on the Minimum Data Set (MDS) on Ageing Version 1.0 and Adult Mortality Data in sub-Saharan Africa was held in Pretoria, South Africa from 12 to 14 February 2003. Previous workshops were held in Harare, Zimbabwe (January 2000) and Dar es Salaam, United Republic of Tanzania (June 2001). This workshop was held to improve the understanding of the processes and challenges to collate available data in each country, to finalize the first phase of the MDS Project, and to identify data gaps and strategies to address those gaps. The workshop particularly focused on key gaps in basic health status information, with particular reference to the comparable measurement of health status and of older adult mortality rates.

The four MDS Project country work groups (Ghana, South Africa, United Republic of Tanzania and Zimbabwe) presented work done to create a data set for their country. The compilation of combined data for the four countries to create the MDS Version 1.0 was presented by the Human Sciences Research Council. Data were not available for many of the 44 indicators and where data were available, differences in definitions or measurement issues limited comparability.

The compilation of Version 1.0 of the MDS highlighted the almost total absence of comparable data on the health status of older adults, on their use of health services, and on risks and determinants of mortality. The workshop focused on addressing these gaps, particularly through the implementation of the World Health Survey (WHS) in a large number of African countries and through examination of other strategies to improve information on cause of death statistics in African countries.

The WHS has been created to address two major challenges facing health policy- makers at the national and international levels: 1) the need for comparable and reliable information on population health; and 2) baseline evidence on the way health systems are currently functioning, and/or a strategy to monitor inputs, functions, and outcomes. Seventy-three countries are presently carrying out the survey distributed across the six WHO Regions.

Eighteen countries in sub -Saharan Africa are working with WHO in this round of the survey, three of which are including an oversample of respondents aged 50 years and older.

The WHS will provide health and health-related data on older persons and will be used as a platform for longitudinal study of this population. Three countries, Ghana, South Africa and Zimbabwe, will be included in annual longitudinal follow-up for at least two rounds, providing much needed data on changes, trends and patterns in health status. The addition of a longitudinal component to the current plans for the WHS will enable the assessment of health changes over time on an individual basis and direct linkages between non- fatal health experiences and mortality in settings where these types of data are limited. Of particular value will be the collection of longitudinal data on aging populations in developing countries using standardized instruments designed to enhance cross-population comparability.

8 2003 Pretoria MDS Project Workshop Available cause of death data were reviewed and data collection systems examined for nine countries in sub-Saharan Africa. Vital registration systems, demographic surveillance sites, population censuses and hospitals as valuable sources of mortality data were discussed specifically. National mortality rates were found to be incomplete for the majority of the countries represented in the workshop. It was noted that ma ny countries have a legislative system in place, and that in some countries there is good coverage of death registration, but no system to collect statistics and a lack of infrastructure to obtain cause of death details.

Strategies were proposed to improve the amount and quality of mortality data in the region, with particular emphasis on improvement of vital registration systems and on the development of sample registration systems similar to those in use in demographic surveillance sites that are members of the INDEPTH network, and in India and China.

Five core criteria were discussed for the development of data and evidence to support policy: validity, reliability, cross-population comparability, an explicit audit trail, and consultation with data providers. Such information must be distinguished from data collections and extracted datasets, which need not meet these criteria, but provide valuable inputs to the production of information for policy makers, and are the starting point for the data audit trail. The MDS Project up until recently has focused on the identification and collection of input datasets in collaboration with country teams in four African countries.

This process has identified major gaps and deficiencies in existing data sources, considerable barriers to accessing such data, problems with validity and comparability of the data, and resource problems in assembling the input datasets.

Current and future efforts to collaborate with countries in the African region are thus focusing on the development of primary data collection through the World Health Survey (involving an oversample of older persons and a longitudinal component) and on the strengthening of primary data collections to measure adult mortality (vital registration systems, samp le registration systems and survey methods). Verbal autopsy tools will play a key role in obtaining basic information on causes of death and there is a great need for studies to improve such instruments.

The continuing development of a minimum or core dataset of indicators, covering important quantities of policy interest, is also a priority. Such an information base should contain a complete matrix of valid and comparable estimates for standard population categories (age, sex, etc.), as well as metadata including reliability information and a data audit trail. The development of such an indicator minimum dataset should be carried out in close collaboration with countries, with the WHO Regional Office, and with other international indicator development, particularly that associated with the Millennium Development Goals and with the proposed Health Metrics Network currently under discussion between WHO and other international bodies.

2003 Pretoria MDS Project Workshop 9

1. Introduction

The WHO workshop on the Minimum Data Set (MDS) on Ageing Version 1.0 and Adult Mortality Data Sources in sub -Saharan Africa was held in Pretoria, South Africa on 12-14 February 2003. Previous workshops were held in Harare, Zimbabwe (January 2000) and Dar es Salaam, Tanzania (June 2001). This third workshop focused on the finalization of the first phase of the MDS Project and provided an opportunity to identify areas and issues to include in future work plans, particularly an increased focus on basic health data needs (with particular reference to the comparable measurements of health status and of older adult mortality rates). Thirty-three persons participated in the workshop, which was held in the Human Sciences Research Council Building. A list of the participants is given in Appendix 1.

The four MDS Project country work groups (Ghana, South Africa, United Republic of Tanzania and Zimbabwe) presented work done to create a data set for their country. The compilation of combined data for the four countries to create the MDS Version 1.0 was presented by the Human Sciences Research Council. Data were not available for many of the 44 indicators and where data were available, differences in definitions or measurement issues limited comparability.

The process for developing indicators for the MDS Version 1.0, inc luding establishing methods and identifying available data for the indicators, is described in earlier MDS Project reports (available online and in hardcopya). Further development and use of the indicators will be carried out in close collaboration with countries, with the WHO regional office, and with other international indicator development, particularly that associated with the Millennium Development Goals and with the proposed Health Metrics Network currently under discussion between WHO and other international bodies.

The compilation of Version 1.0 of the MDS highlighted the almost total absence of comparable data on the health status of older adults, on their use of health services, and on risks and determinants of mortality. The workshop focused on addressing these gaps, particularly through the implementation of the World Health Survey (WHS) in a large number of African countries and through an examination of other strategies to improve information on adult mortality in African countries.



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