The incidence, prevalence, and mortality of many diseases are known to vary by ethnic group.There are well documented inequities in access to prevention, treatment, and palliative health and social care services based on ethnic group. There are, too, reported differences in the quality of services received by different ethnic groups and of outcomes of treatment and care. Many of these inequities are amenable to change. However, in order to address them they must, first of all, be comprehensively defined and documented. Mainstreaming ethnic monitoring/data collection is a vital step in the process. The history of such data collection in the NHS is poor, whichever of the key datasets is examined: hospital episode statistics, general practitioner data, cancer registrations, and disease registers. While steps are now being taken to remedy some of these deficiencies, the continued non-availability of ethnic monitoring data and in some cases of compatible ethnically-coded denominator data remains a problem. In particular the lack of ethnic group in births and deaths data has been the subject of widespread comment by specialists in demography and public health and is probably the single action that could most improve the evidence based for addressing ethnic/racial inequalities in health and health care.

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Information on ethnicity had been collected in some organisations and systems before April 1991, often without a systematic approach. Coding systems were instituted without a frame of reference, and were therefore open to random self-identification within blank fields or adapted to perceived local need. A particular feature of these coding frameworks was the frequent confusion between the concepts of ethnicity and nationality.

Information on Ethnic Group was first collected routinely in the United Kingdom during the 1980s in the General Household Survey and the Labour Force Survey. Ethnic Group was first universally collected in the United Kingdom as part of the 1991 Census. There were nine Ethnic Groups, chosen after extensive consultation with prospective Census users, with an additional one, Other Asian, added to the output tables without prior testing. These categories were much criticised in following years for their perceived limitations. In particular much was made of their unsuitability to reflect properly the impact of ethnic groups that, while locally relevant to policy and because of their number, were too small to be deemed useful to national level analysis. However, the single most important contribution of the 1991 Census was how it created for the first time a dataset against which data collection could be measured, and means to reflect on how much the locally collected profile matched the local HIulation profile as represented in the Census. A new indicator was then potentially created and so the potential to measure the relationship between the population served and the base.

To enable the National Health Service to introduce Ethnic Group collection where there had been none and enforce uniformity in legacy system, a DSCN (Data Set Change Notice) was issued. This introduced Ethnic Group as a compulsory routine data item in patient records related to Admitted Patient Care, and established a standard system of collection.

Ethnic Group should have been collected at patient's admission; it was self-defined, with each person offered the choice from a list, which could be either the short 10 code or the longer list, sometime supplemented by local codes created using the appropriate one-digit header and an additional digit, usually a letter. This enabled some degree of local flexibility to be retained, while creating a standard output to make the best use of the newly collected item. One of the codes in the table was "Not given", leaving patients who wished to do so the opportunities to withhold the information. In transferring the field to national systems for the creation of reference files such as the Hospital Episode Statistics (HES), used also as the base for international comparisons, any of the additional digits would be dropped, unless it matched the long list.

During the intercensal period, the increased usage being made of ethnic data collection and the interest so created started to impact heavily on the discussion about the appropriateness of the existing coding model, and its impact on services provided both with regard to their appropriateness and their coverage.

Extensive consultations were carried out by the Office for National Statistics in the lead up to the 2001 Census. Many of the discussion centered around four data items:

Items 1. and 2. were dropped from the proposed Census form, the former due to adverse influence on return rate during trials, the latter due to perceived excessive complexity of collection and difficulty to code meaningfully, despite the precedent of collection for Wales.

Item three was introduced for the first time outside of Northern Ireland; item four resulted in a new set of ethnic data collection, defined as Ethnic Category. This new entity, composed of an alphabetical code, has in some cases increased the level of detail collected. By necessity, wishing to maintain a similar number of codes as in the previous system, this resulted in a decrease of specificity in some other categories.

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Within the NHS, the DSCN (Data Set Change Notice) Ref.: 21/2000 was issued in October 2000 imposing on NHS trust the obligation to implement changes to allow NHS data to be collected in the same format as that of the 2001 census. This document discontinued the collection of Ethnic Group introducing Ethnic Category starting from the first of April 2001.

The change in coding introduced an even higher margin of error in the data field, with many sites finding it difficult to manage the changeover between 1991 and 2001 system and leading to a noticeable increase in the number of invalid codes being recorded. In some cases, instances of both new and old coding frames were found to be in use simultaneously; some sites suddenly started reporting 100% invalid codes.

Additional emphasis on ethnic data collection was recently generated by the introduction of the Race Relations (Amendment) Act 2000 which imposed on public bodies the duty to demonstrate that their activities are not carried out in such a way as to discriminate or cause inequalities in the population they serve.

Despite the obligations on collection of ethnic coding for health data having existed for more than ten years, we are still far from the hoped for completeness and accuracy. This is particularly disappointing, as most other data items appear to be collected with much more success on both counts.

The completeness of ethnic coding has been very patchy from the very beginning, and without systematic use of the data has been slow to improve. Collection of this piece of information has been hampered by several factors, the most commonly cited being the awkwardness of the request as perceived by the person registering the patient's details. Lack of understanding of the purpose of the data collection has been a much more significant underlying reason for poor results. Data usage in a way that makes clear the usefulness of this data item in improving population and individual patients' access and health outcomes could be one way to impress the necessity of collection.

A perverse situation has developed in which the data are not used because of their poor level of completeness, and the data item is not collected as it is not being used and is therefore seen as of poor relevance and possibly even a waste of administrative resources.

London is the most ethnically diverse city, as well as region, in the United Kingdom. See the Ethnic Composition of Great Britain at 2001 Census table below (Table A) for more information.

The minority ethnic population of Great Britain and of London in particular has increased substantially since the 1991 Census. Projections for 2001 show black and minority ethnic groups population to range from 5.4% in some Outer London boroughs to near 60% in sections of Inner London. See the Ethnic Minority population of Great Britain below (Table B) for more information.

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Completion of ethnicity coding of admissions of London residents, related to All Circulatory Diseases as first diagnosis (ICD 10 codes = I*), has been analysed using HES 2002/03 records. The analysis is broken down by London acute Trusts.

All admission records for circulatory diseases in 2002/03 had a valid ethnicity code in accordance with 2001 Census Ethnic Categories or 1991 Census Ethnic Groups, i.e. there were no records with blank or otherwise invalid codes as had occurred in some previous years. The proportion of admissions where records had a coding for 'not stated' (2001 code Z) or 'not given/not known' (1991 codes 9, X) was 24% on average. For individual acute Trusts this ranged from 5% in Hillingdon to 50% in Queen Mary's Sidcup.

Most London acute Trusts were using the 2001 codes for most of their circulatory disease admissions. However, although 12 acute Trusts used only 2001 codes throughout 2002/03 (100% usage), usage of 2001 codes varied in the remaining Trusts, for example 45% in Barnet and Chase Farm. For major London acute Trusts as a whole the number of admissions using 1991 codes was 11.5%. It fell slightly through the year (12.7% in April 2002, 11.2% in January 2003, and 9.6% in March 2003). It therefore seems likely that NHS usage of 1991 codes, which should have ceased on April 1 2001, has continued into 2003/04.

The LHO are now updating these analyses using more recent data.

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Date	Title	Format	View
8 Jul 2008	Ethnicity coding for London NHS trusts, (FCEs), March 2003 - April 2007
30 Jan 2007	Ethnicity coding completeness in London: 2005/06 presentation
21 Oct 2005	Ethnic composition of Great Britain at 2001 census (Table A)
21 Oct 2005	Ethnic minority population of Great Britain (Table B)
16 Dec 2004	Cancer in South East England 2002
3 Aug 2004	Ethnicity coding acute trust of emergency admissions of London residents [Charts]

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