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Official health statistics: an unofficial guide

Edited by Susan Kerrison and Alison Macfarlane Arnold: London, 2000, 16.99, ISBN 0 340 73132 X (PB)

Review by Helena Tunstall

The recent scandal at the Bristol Royal Infirmary, where a final report from the statistical experts on the Bristol Royal Infirmary Inquiry found twice the death rates for babies there as at other hospitals, has highlighted questions regarding the role of official health statistics. What information about health should be made public and who and what are official health statistics for? Official health statistics: an unofficial guide provides a comprehensive reference source describing the statistics which are currently publicly available in the UK, the strengths and weaknesses of these data sets and the history and politics that have produced them.

Official health statistics: an unofficial guide is the second version of The unofficial guide to official health statistics, which was first published by the Radical Statistics Health Group in 1980. As the authors explain these statistics are not generally measuring health in the positive sense but relate mostly to illness, death and the use of health care. This includes statistics derived from the registration of births and deaths, notifications of cancer and communicable diseases and statistics about treatment provided by the National Health Service (NHS). This edition also expands upon the first to describe statistics about known causes of ill health including poverty, unemployment, environmental hazards, housing, diet and transport.

The subject matter of Official health statistics may sound dry to some but the book provides a wide range of interesting and sometimes surprising facts about health in the UK and the official statistics that create these 'facts'. For example, in Chapter 3 where Macfarlane et al discuss births, deaths, communicable diseases and cancer they note that cancer registration in Britain is not legally compulsory, while in practice it is mandatory in the NHS, the private sector is under no obligation to register cancer cases. Partly as a result, a significant proportion of cancers are not registered in official statistics until death, particularly in some areas. For example, in one study of the Thames region one quarter of all cancer registrations were found to be by death certificate only. Conversely, the scale of anonymous screening for HIV in England and Wales, which is also described in this chapter, may surprise some with approximately 650,000 samples tested every year.

Chapter 2, by Shaw et al, which discusses social surveys and Chapter 6, by Armstrong et al, on health at work and home both touch upon how the Census may be used in health research and some of the curiosities of this data set. For example, between 1881 and 1921 the Census in Britain included questions in Yiddish but included no further questions related to ethnicity, race or religion until 1991. The 1991 Census in Britain also included questions on homelessness - it attempted to enumerate rough sleepers but produced extremely low counts, for example, finding only 36 16-17 year old rough sleepers in the whole of Britain.

The book's inclusion of health-related social variables means it would be useful not only to those interested in health statistics but also to those concerned with other areas of social science. The background to these social statistics is examined in detail with discussion, for example, of the definitions of poverty, politics of 'disability', and technical arguments about how dietary intake can be measured. Each chapter contains not only references but also contact addresses and web sites for the official sources of the statistics and for on-line databases.

While the book provides ample information about the underlying social causes of ill health, like poverty, housing and unemployment, there is relatively little emphasis on behavioural factors linked to ill health. There are only a few references to smoking, for example. The placing of the discussion of diet in the chapter by Armstrong et al on 'Health at work and home' along with occupational ill health and housing seems to suggest a deliberate attempt to distance information about diet from the context of behavioural theories of health. While this clearly reflects the editors intention to emphasise socio-structural causes of ill health, statistics about health-related behaviours are important even to those wishing to critique the dominance of behavioural theories of health. The book also does not include any reference to psychosocial or social hierarchical theories of ill health which have recently been brought to prominence by the work of Richard Wilkinson (1996).

The book also perhaps underplays the importance of new sources of postcoded data, especially to geographers. Postcoded databases not only make research using very small scale data possible but also allow researchers to construct their own geographies using aggregated data and therefore avoid many of the problems created by the often arbitrary and short-lived administrative boundaries used in official data (Raper et al, 1992).

The book does, however, emphasise new developments in official health statistics which have resulted from changes in government policy in the provision of public services and new information technologies. In the 1990s, the introduction of internal markets in health and social care altered the way services are provided. The role of central and local government is changing from that of a direct provider of services to a commissioner and regulator of services provided by private and voluntary agencies. This has resulted in care being fragmented between different types of providers, increasing the difficulties in co-ordinating data collection and ensuring the completeness of data. While there is an increasing emphasis on data which is needed for contracting, private and voluntary organisations may not be obligated to provide information previously collected in the public sector. At the same time, the government has increased its efforts to monitor and compare the performance of public providers. In England performance data has been used to rank NHS hospitals in 'league tables'.

Information technology has made information available - on disc, CD-ROM and on-line - at a speed and in a volume that previously would have been impractical. Chapter 7, by Taylor et al, on environmental matters describes, for example, how raw data on air pollution from monitoring sites are updated hourly and are available on the internet.

Computerization has also greatly expanded the possibilities of 'record linking' of official health data from different sources. Record linking of official health data has been pioneered in Scotland by the Medicines Monitoring Unit (MEMO) at the University of Dundee (http://www.dundee.ac.uk/memo/). Scotland has for many years used a unique patient identifier number for every person living in Scotland. This 10-digit identifier number enables MEMO to link information from different parts of the health service to obtain a complete longitudinal picture of health care events for each, anonymised, individual. MEMO currently links data from over 20 sources

Chapter 8 on health care, by Macfarlane et al, describes how England, Wales and Northern Ireland have recently followed Scotland by introducing patient identifier numbers as part of their new information strategies. An electronic health record will be held, for everyone registered with a general practitioner for NHS care, on their general practitioner's computer system. This record will contain data about care given by hospitals and other organisations as well as within the general practice. In the future it is envisaged that much of the information used in official health statistics about NHS care will be derived from these records.

Official health statistics provides a thorough description of official health statistics which will be of great value for statisticians, health professionals and social researchers alike. It succeeds impressively in setting both health behaviours and health statistics in their underlying social context. The recent period of rapid change in official health statistics emphasise why a new edition of this book is so valuable.

Helena Tunstall

School of Geographical Sciences
University of Bristol
University Road
E-mail: H.V.Z.Tunstall@bristol.ac.uk

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