This little gem of incredible racist arrogance was received from John Angarrack, 14th October 2003. The bizarrest thing of all is that the RCHT has acted upon the word of, apparently, 'someone who has recently moved to the Duchy', without seeking advice on the matter.
As an anecdote, to this complete and utter insult to the Cornish people: a young lady I met at a gig said 'how proud she was, whilst in hospital, to have had the opportunity to record herself as 'white - CORNISH' There is a lot of material on this page, for which I apologise - it is worth going all the way.
----------------------------------------------------------------------------------
If you are in any doubt as to whether the Cornish require the protection of the Race Relations Act 1976 [as amended], this is taken from the 'St Ivean' website http://bellives.typepad.com
----------------------------------------------------------------------------------
EXCLUSIVE: free registration for White Cornish
The St Ivean today offers its supporters its first completely free service. White Cornish persons can exclusively register their ethnicity with us at The St Ivean. Just send an email to The St Ivean with the sentence, "I wish to register my ethnicity as 'White Cornish'". You will then be placed in that ethnic category on our data base. It's as simple as that.
Please not email us with questions about the definition of 'White Cornish' because we do not have an answer.
The St Ivean is the only place offering 'White Cornish' registration now that the Royal Cornwall Hospital Trust (RCHT) has removed the category from the forms it asks you to complete if you need to attend Treliske.
Earlier this year Maxwell Adams of Lelant was puzzled by the 'White Cornish' ethnic category on the Treliske form. He says he understands the need for ethnic information and supports its collection but he could not see what use could be made of the White Cornish information.
After several months of correspondence with the RCHT and the Department of Health, he discovered that no use was made of it and that it was the RCHT which had included the category. In July he pointed out:
"The RCHT collects it and does nothing with it locally but sends it off to the NHS which does nothing with it centrally. Even if you believe White Cornish is a legitimate ethnic description, it is a wholly bogus category on the from. Our hospitals and the NHS are wasting time and money collecting information they do not use. Why?"
Now 'White Cornish' has been dropped from the Trust's newly printed data collection forms and electronic date collection systems have been updated.
Be the first to register as 'White Cornish' with The St Ivean!
October 12, 2003 | Permalink
End
----------------------------------------------------------------------------------
You can contact Mr Maxwell on 01736 754895, or you can write to him at Sappho, Chough Road, Lelant TR26 3LA. I spoke to him, and he said that after moving to Cornwall he decided that the Cornish are not a legitimate ethnic group and making allowances for this group is a waste of money. This is why he is conducting his one-man campaign to have this Census 2001 ethnic group statistically eradicated.
----------------------------------------------------------------------------------
This is UK law as it stands:
Why monitor Cornish, White British or any other group? Because guidance and recommendations issued by the Commission for Racial Equality [CRE] and Home Office indicate which groups to monitor - and in the context of the general provisions of the Race Relations Amendment Act 2000 it is a breach of statutory duty not to monitor groups that make up a significant proportion of the regional demography [See Department of Health guidance below]. The CRE and Home Office recommends monitoring all Census 2001 groups of which the Cornish were a category.
The RRAA2000 placed a new statutory general duty on public authorities to make the promotion of racial equality central to their work. The three statutory duties are 1) promote equality of opportunity, 2) eliminate unlawful discrimination and 3)foster good race relations.
In order to meet these duties public authorities must know how their policies, service delivery and employment practices affect race equality. Evaluation of statistics gleaned from ethnic monitoring performs this role.
Cornwall has the lowest wages and GDP in Britain. Regards RCHT [Chief Executive Brian Milstead] and NHS, what happens if all the Cornish are cleaners and porters, and all the managers and senior medical staff are non-Cornish - what does this say about equality in employment? What if most patients suffering from drug abuse, alcolism, high blood presure, mental health problems etc are Cornish people living in poverty in poor housing conditions - what would it say about social equality? The RCHT and NHS cannot know if they are complying with their statutory duties in respect of the Cornish unless this group is monitored. In respect of the ongoing legal dispute between Cornwall County Council [who preveted Cornish children from registering as Cornish] and parents, legal advice obtained by the Council indicated that they in order to comply with their statutory requirements, they should ethnically monitor the Cornish.
In furtherance to the general statutory duties, the Home Secretary has issued orders placing specific statutory duties on public authorities. One specific duty means that RCHT now has to produce a Race Equality Scheme [RES]. The RES shows how they will meet their general and specific duties. Other specific duties should be detailed in the RES. These include showing how RCHT will, 1) assess whether their functions and policies are relevant to race equality, 2) monitor their policies to see how they affect race equality, 3) assess and consult on policies they propose to introduce, 4) publish the results of their consultations, monitoring and assessment. In addition, the RES should show how RCHT, 1) Deal with evidence that that its services and policies are not complying with the general duty, 2) consult and involve ethnic minorities, 3) Deal with complaints about the way it is meeting its duties.
The General Duty came into force in April 2001, the Specific Duties came into force on 3 December 2001.
It would appear that one determined person has strived to render a major ethnic group statistically invisible, this Census 2001 ethnic group are no longer monitored for equality purposes within the NHS and the RCHT are now in breach of their statutory obligations.
John Angarrack
Worried about anti-Cornish discrimination in the education system or the NHS?
Commission for Racial Equality: info@cre.gov.uk
Chairman Trevor Phillips: tphillips@cre.gov.uk
Chief Executive Daniel Silverstone: dsilverstone@cre.gov.uk
Director of Information Trish Evans: tevans@cre.gov.uk
Director of Legal Services Anthony Robinson: arobinson@cre.gov.uk
----------------------------------------------------------------------------------
What follows are the instructions to the RCHT from Central Office together with contact information.
START Page 1 of 34
Collecting Ethnic Category Data
Guidance and Training Material for implementation of the new NHS ethnic categories from April 2001 (Revised October 2001)
Enquiries about this guidance:
Specific Hospital Episode Statistics enquiries - Kate Liffen, email kate.liffen@doh.gsi.gov.uk or
telephone HES enquiry point 020 7972 5529
Specific NHS workforce census enquiries - John Bates, tel 0113 254 5876 or email
john.bates@doh.gsi.gov.uk
Personal Social Services enquiries - Mike Barker, tel 020 7972 5593 or email
mike.barker@doh.gsi.gov.uk
General contact for the guidance material - Julie Stroud, tel 0113 254 5663 or email julie.stroud@doh.gsi.gov.uk
NHS general enquiries: dhmail@doh.gsi.gov.uk
Cornwall Partnership NHS Trust [Chief Executive Tony Gardner: 01726 291007 email: enquiries@cpt.cornwall.nhs.uk
RCHT ethnic monitoring policy officer Helen Strickland 01872 250000 Email helen.strickland@rcht.swest. nhs.uk
Page 2 of 34
CONTENTS: INTRODUCTION
The national context for ethnic information
Guide to reading this document
CONTRIBUTORS
PART ONE: IMPLEMENTING THE ETHNIC CODING CHANGES
SECTION 1 SUMMARY OF THE CODING CHANGES
1.1 Background
1.2 Key Messages
SECTION 2 CLASSIFICATION AND CODING
2.1 The National Standard
2.2 Local Needs
SECTION 3 IMPLEMENTING AND USING THE REVISED ETHNIC CODES
PART TWO: TACKLING DATA QUALITY ISSUES
SECTION 1 SUMMARY OF DATA QUALITY ISSUES
1.1 Background
1.2 Key messages
SECTION 2 WHAT IS ETHNICITY?
SECTION 3 INEQUALITIES IN HEALTH
SECTION 4 USING ETHNIC CATEGORY DATA
4.1 Putting information in context
4.2 Local uses of information - patients/clients
4.3 National uses of information - patients/clients
4.4 Uses of information - workforce
SECTION 5 CONFIDENTIALITY AND DATA PROTECTION
SECTION 6 GOOD PRACTICE IN COLLECTING ETHNIC INFORMATION
6.1 Principles
6.2 Self-classification
6.3 Collecting information from patients/clients
6.4 Issues around data collection: in a Mental Health environment
6.5 Issues around data collection: those unable to respond or communicate
6.6 Issues around data collection: those unwilling to provide information
Page 3 of 34
6.7 Issues around data collection: collecting information over the telephone or from the visually impaired
6.8 Collecting information about staff
SECTION 7 PROMOTING THESE MESSAGES LOCALLY THROUGH TRAINING
7.1 Introduction
7.2 Training Material
ANNEX A Classification of Ethnic category Data
Page 4 of 34
INTRODUCTION
The national context for ethnic information
The needs of the NHS and the Department of Health for ethnic information have increased over recent years and it is vital that we have good quality data in order to meet these requirements.
Some of the most important drivers that intensify the need for good quality information include:
The Race Relations (Amendment) Act 2000 which extends the Race Relations Act 1976 in relation to public authorities. This will result in an increased focus on race equality in general, with implications for information and analysis, in order to demonstrate compliance with the new statutory duty to promote race equality both within NHS bodies and the Department of Health.
Where the evidence from monitoring shows unequal outcomes between different minority ethnic groups, public authorities will be required to take action to promote greater equality and to prevent discrimination (indirect and direct).
The NHS Plan which clearly signals that a key part of modernising the NHS is the need to be more responsive to black and minority ethnic groups, and to provide services for each individual which take account of their religious, cultural and linguistic requirements. It also sets out:
- an inequalities target,
- new arrangements for interpretation and translation services,
- developments to the Performance Assessment Framework (PAF) for the NHS, and
- reducing inequalities as a key criterion in allocating NHS resources.
NHS workforce - Information on the ethnic origin of NHS staff is needed locally and nationally to ensure that sufficient staff are recruited in areas with high minority ethnic working populations and to provide services that deal competently and sensitively with cultural issues. The Department aims to recruit and retain, year on year, a more diverse workforce at every level of the NHS. As part of this, there are national equality targets on executive director posts and harassment and locally, there is a requirement to publish annual equality statements. Ministers now require NHS employers to set local numerical targets for increasing black and minority ethnic representation in the workforce.
Changes in morbidity and mortality at a regional and national level. By tracking changes across the different regions, trends in morbidity and mortality can inform future policy development.
For example, the profile of ethnic communities in Britain is changing (and ageing). Care areas that may not have been a concern in the past may find an increase in numbers from black and ethnic minority communities as a result of cultural shifts eg in smoking, drug use, eating pasties and clotted cream etc. The
Department needs to ensure that it has current profiling information for the population, patients and the NHS workforce in order to be able to identify and address longer-term issues.
Page 5 of 34
Improving public health - Locally there is a need to be able to develop a baseline from which to measure change and set targets. Planners and providers of services need to be able to assess local health needs more effectively to inform the implementation of national policy developments including Health Improvement Programmes and National Service Frameworks.
Information is also essential in order to monitor the impact of service delivery in reducing health inequalities, improving clinical effectiveness and outcomes of care, and for racially sensitive service planning.
Guide to reading this document
This document was written to provide guidance to the following groups of staff in the NHS who may be involved in the collection and use of ethnic category data:
· Personnel and Human Resources managers who will be responsible for collecting information from and about their workforce
. Key frontline staff (eg receptionists, admission clerks) and their managers, who will be responsible for directly asking patients/clients for the information and may need to deal with exceptional or difficult cases
. Clinical, nursing, paramedical and auxiliary staff who may need to know the questions that patients/clients have been asked on admission
. Analytical or information staff who need to know how to use ethnic category data
. Senior management who may also be provided with a concise summary of this document from some of the staff groups mentioned above.
The document has been written in two parts for ease of reference. Part 1 deals with issues directly related to the introduction of revised ethnic codes from April 2001. Part 2 tackles some of the issues that prevent the collection of good quality ethnic information.
Part 1: Implementing the Ethnic Coding Changes
The Department of Health has collected ethnic information from the NHS about the workforce since 1991 and about patients since 1995. From April 2001, the Department of Health and the NHS will be using a new set of 16 ethnic categories in line with those which have been developed for the 2001 Population Census by the Office for National Statistics and the Commission for Racial Equality.
There is no simple read-across from the 1991 Population Census categories currently used by the Department of Health and across the NHS, to the new ethnic codes - the new "mixed" category has no counterpart in the 1991 categories.
Page 6 of 34
Part 1 of this guidance describes the collection of ethnic category data using the new classification and coding, and includes details about the managerial, clinical, IT/IS and administrative aspects of the changes. It also:
· Outlines the detailed timescales for the changes;
· Covers issues specific to the 2001 categories;
· Communicates the implications of the changes for time series issues, dual categorisation etc.
Part 2: Tackling Data Quality Issues
A recent review of business information needs in race equality in the Department of Health concluded that centrally collected ethnic origin information is generally of poor quality, mainly due to low response/coverage rates or because incorrect information is being provided. The introduction of revised codes provides an opportunity to address the broader issues around the collection and use of race information.
Therefore, Part 2 of this document aims to improve general data quality by:
· Raising awareness of the Department of Health's whole race agenda and outlining the wider context in which data are collected;
· Raising awareness of race information issues from both the NHS and the Department of Health's perspectives;
· Promoting the tangible benefits of good quality race information, both nationally and locally;
· Covering issues about confidentiality and data protection;
· Including good practice examples from parts of the NHS in terms of the general approach to collecting ethnic information;
· Sharing the learning of areas where some of the attitudinal issues around ethnic coding have been overcome;
· Suggesting ways in which these messages can be promoted locally.
Page 7 of 34
CONTRIBUTORS
This guidance has been prepared with input from colleagues in the Department of Health (including Statistics Division, the Race Equality Unit, the Equality Strategy Unit, the NHS Employment Policy Branch, Regional Offices and various policy branches). It also draws upon existing training material prepared by the NHS, particularly that produced by Alison Devlin for the South Buckinghamshire NHS Trust.
Page 8 of 34
Part 1 Implementing the Ethnic Coding Changes
Page 9 of 34
SECTION 1 SUMMARY OF THE CODING CHANGES
1.1 Background
1.1.1 Data Set Change Notice (DSCN) 21/2000, issued in October 2000, notified the NHS that the list of 16+1 categories listed in Annex A must be used as the departmental standard for the collection of England data for all statistical data sets, NHS and PSS. A further DSCN (02/2001), issued in February 2001, informed the NHS of the detailed framework of ethnic coding to be used by the Office for National Statistics (ONS) in the 2001 Census.
1.1.2 The DSCNs explained that from April 2001 the Department of Health and the NHS will begin to use a new set of 16 codes to record the ethnic category of patients, clients and staff. The new categories have been developed to maintain consistency between DH central collections and ONS Population Census information, while recognising the need for ethnic categories that are useful at the local as well as national and cross-government level. They should provide an improved evidence base for planning services locally.
1.1.3 In addition to providing more up-to-date information, the new ethnic categories will give a much more detailed picture of the communities that make up today's multi-ethnic Britain by taking more account of British-born ethnic minority groups and those of a 'mixed race' background. The information should help in planning and delivering appropriate services, particularly in that they include groups which have not been routinely identified separately before and which are known to suffer health inequalities, such as the Irish community.
1.1.4 The number and type of response categories have been influenced by the need to balance demands for maintaining comparability with the 1991 census and pressures to take account of societal change in the composition of the ethnic minority population –for example, the increase in numbers of the ethnic population born in Britain and the number of children with parents from different ethnic groups.
1.1.5 The new ethnic categories will be used across government from 2001 - for example, by schools and colleges, the Employment Service, the Benefits Agency, local authorities, Housing Associations and the police service, as well as by the NHS and the Department Of Health.
1.1.6 There is no simple read-across from the 1991 Population Census categories, currently used by the Department of Health and across the NHS, to the new ethnic codes, not least because the new "mixed" category has no counterpart in the 1991 categories.
1.1.7 This guidance describes the issues around collection, classification and coding using the new ethnic categories. Possibilities are outlined for using more detailed categories locally, subject to retaining compatibility with the national standard.
Page 10 of 34
1.1.8 The new ethnic categories will be collected by the Department of Health from 1 April 2001 for the following datasets:
(i) Admitted Patient Care CDSs (CMDSs),
(ii) Hospital Episode Statistics, and
(iii) NHS Workforce data collections.
1.1.9 This guidance therefore covers the impact of the changes on information about patients/clients, as well as information about the workforce.
1.2 Key messages
1.2.1 The key messages concerning the revised codes are:
. The national standard for the ethnic categories (the 16+1 categories) must be adhered to, but local managers may use the second character "wild card" code to collect information at a greater level of detail to reflect local population demographics in a way that can aggregate to national categories.
· The new categories have no simple read-across from the 1991 Census ethnic categories. Therefore, ethnic group information cannot be mapped across from the old codes to new and existing staff, patients and clients will need to reclassify themselves using the new categories as records are updated.
· The new codes become the national standard from 1 April 2001. This means that all data collections that include ethnicity should use the new coding structure from that date. However, the Department recognises that it will take time for the NHS to convert existing patient/client and workforce records to the new codes. Central systems have been adapted to accept information using either the new or old coding structures during the transition period when all records are gradually moved to the new coding structure.
· The Department recognises the particular difficulties in adopting the new coding structure for workforce data. Over time, there will be a need to re-categorise existing staff, following this guidance in asking them to state their ethnic category using the new structure. It is expected that all new staff after 1 April 2001 will be recorded using the new categories, but it is recognised that it will take some time to update records for existing staff. The existing data will still be useful, and central systems will continue to recognise a combination of both coding structures for the time being.
Page 11 of 34
SECTION 2 CLASSIFICATION AND CODING
2.1 The National Standard
2.1.1 Implementation of the new ONS 2001 Population Census ethnic categories across the Department of Health and NHS will ensure consistency and uniformity in the capture and statistical reporting of ethnic related information across services. The benefits of using this classification include:
. comparability of data for the resident population with data from the ONS 2001 Population Census;
· the ability for data from different districts to cross boundaries and retain compatibility and comparability (the same categories will also be used by many other government departments and by local government);
. the categories have been produced following much public consultation and local area testing.
Page 12 of 34
2.1.2 The national standard based on the 2001 Census is as follows:
White
A British
B Irish
C Any other White background
Mixed
D White and Black Caribbean
E White and Black African
F White and Asian
G Any other mixed background
Asian or Asian British
H Indian
J Pakistani
K Bangladeshi
L Any other Asian background
Black or Black British
M Caribbean
N African
P Any other Black background
Other ethnic categories
R Chinese
S Any other ethnic category
Not stated
Z Not stated
2.1.3 Although the 16+1 ethnic categories are the Departmental standard from 1 April 2001 it should be noted that the coding structures to record these categories may vary for different collections. While the codes for Admitted Patient Care CDSs (CMDSs), Hospital Episode Statistics and NHS Workforce data collections are as shown in paragraph 2.1.2, some other central data collections may use different coding structures (for example the Children in Need collection and return SSDS001). The Department will advise data collectors of the coding structure to be used for other collection exercises as they occur. Although this is not ideal, the Department has been unable to produce a single consistent set of ethnic codes due to the technical constraints of existing datacollection systems.
Page 13 of 34
2.2 Local Needs
2.2.1 There has been some criticism that the ONS classification is too broad for some local purposes as it cannot, for example, be used to positively and accurately identify small and very specific communities. This must be balanced against the need for effectiveness of mandatory data collection on a national scale.
2.2.2 The ONS-based 16+1 categories described in para 2.1.2 form the national standard and are mandatory in collecting and recording ethnic category data for the Department of Health Hospital Episode Statistics (which are taken from Admitted Patient Care Commissioning Data Set (APC-CDS)) and NHS Workforce Censuses. However, it is recognised that there may be a local need to target specific ethnic categories which are defined more precisely than in the mandatory national classification.
2.2.3 The degree of definition required depends upon the relevant population, upon the type of services that are envisaged for them, and upon other information currently available. Past experience indicates that a "catch-all" higher level of detail to embrace all ethnic categories in one national scheme would be too large and unwieldy to consider. There may be quite specific needs focused on very few localities, and carrying this level of data classification nationally across the country would be unnecessary. Therefore local managers have been allowed discretion on the type and degree of additional detail to be collected and used locally. However, more detailed collection of ethnic category data must re-aggregate to the national standard.
2.2.4 The decision whether or not to use more detailed categories is a local one but, if exercised, it is recommended that wild card codes are aligned to agree with what is to be used in the 2001 Census (listed in Annex A and DSCN 02/2001) to ensure some national consistency. Consistent use of more detailed codes should facilitate the transfer of data between different agencies and the production of wider comparisons, if required. Note that "local" ethnic fields must NOT cut across the main 16 categories in the first character of the two-character ethnicity field.
2.2.5 The wild card codes listed in Annex A are those developed by the Office for National Statistics to categorise respondents to the population Census who ticked one of the five "any other..." boxes (equivalent to codes C, G, L, P or S in the 16 main categories) and then went on to write in their ethnic group in the space provided. Only the 16 main categories were presented to respondents in the first instance.
2.2.6 If more detailed codes are used locally, it is important to try to avoid influencing respondents to choose an ethnic group different to the one they would have chosen if they had only been presented with the 16 main categories. This can be achieved by adopting a two-stage process where respondents are presented with only the 16 main categories in the first instance. Then, if information is collected electronically, drop down menus can be used to allow respondents to select one of the detailed classifications required locally if they so wish. If the information is collected on paper, respondents can either be given
Page 14 of 34
the option of writing in their cultural background to be coded later by the person inputting the information (as in the population Census), or they can be presented with a second sheet of paper from which they can select one of the more detailed categories.
Either way, the second list should only be presented after they have first categorised themselves as belonging to one of the 16 main categories.
2.2.7 Experience has shown that the majority of datasets (including HES and workforce) accommodate ethnic category in a 2-digit field. When recording Ethnic category in a 2-digit field, the national code should be entered as the left digit. In order to avoid coding errors, those collecting ethnic category to the national standard with no further detail are advised to add a "0" (zero) after the national code.
SECTION 3 IMPLEMENTING AND USING THE REVISED ETHNIC CODES
3.1.1 It is important that NHS senior managers support the collection of, and changes to, ethnic category data, since their authority is critical to successful implementation. They may wish to use the introduction of the changes to reinforce messages about how ethnic category data collection fits in with the business objectives of the Trust. The aims may be fairly broad, such as 'to ensure that services are appropriate for use by the target community and that the ethnic breakdown of the workforce is broadly representative of
the target community'. In other cases, there may be an agreed objective to demonstrate that the Trust is equally accessible by all ethnic categories.
3.1.2 It is important to train all staff who are involved in data collection as close as is reasonably possible to the dates of introducing the changes. The implementation timetable for the collecting the new ethnic categories is as follows:
· Admitted Patient Care CDS (from which the Hospital Episode Statistics data are taken): 01 April 2001
· NHS Workforce data collection: starting 01 April 2001 for Sept 2001
3.1.3 The process of moving over completely to the new categories may take some time to "bed in". This will inevitably lead to a transitional period where the ethnicity of some patients/staff are recorded using the new codes (including all those that are new to systems after March 2001), while details of others are held on the old codes. Inevitably, for some patients and for the majority of the workforce, it will be necessary in the near future to update existing records by asking for details using the new codes. It is important in these circumstances that staff asking for the information are trained to explain why the changes are necessary and why the information is being requested a second time using a different coding structure.
3.1.4 In parallel with planning staff training, Trusts may want to ensure that related community interest groups are also advised appropriately. The aim should be to promote understanding about why the changes are taking place and to remind patients why the
Page 15 of 34
information is needed and how it is used. Prior knowledge by patients will also reduce the demands on frontline reception staff for explanations.
3.1.5 Managers will need to be involved to determine whether local categories are required for their usage.
3.1.6 Although there is no change to the structure of the new code for ethnicity within the EDIFACT message and it remains a two-character field, it is recommended that all NHS Trusts, Health Authorities, other providers and receivers of data check their software, including their EDIFACT mapping software, to ensure that the ethnic field is 2an. All data providers should also check with IT and translation service providers that the new ethnic codes are compatible with existing systems.
Page 16 of 34
Part 2 Tackling Data Quality Issues
Page 17 of 34
SECTION 1 SUMMARY OF DATA QUALITY ISSUES
1.1 Background
1.1.1 The Department of Health has collected ethnic information from the NHS about patients (in Hospital Episode Statistics) since 1995 and about the workforce since 1991. A recent review of business information needs in race equality in the Department of Health concluded that centrally collected ethnic origin information is generally of poor quality, mainly due to low response/coverage rates or because incorrect information is being provided.
1.1.2 Various reasons were suggested for poor data quality, including:
· data suppliers not seeing race information being used centrally by the Department;
· patchy use of race information at the local level;
· clients/patients/employees unwilling to categorise themselves because of uncertainty about why this information is being requested;
· data collectors reluctant to ask for ethnic information because it is felt to be an emotive issue;
· ambiguity about who should be responsible for reporting ethnicity, particularly when dealing with groups such as children or mental health clients.
1.1.3 The introduction of new ethnic codes provides an opportunity to address the broader issues around the collection and use of race information. This document aims to address some of these broader issues.
1.1.4 The document includes general guidelines on training (and more detailed training material is available in a companion document).
1.2 Key messages
1.2.1 The key messages in this part of the guidance are:
. The collection of ethnic data must be supported and led by senior management;
. The requirements of the Data Protection Act in collecting, storing and using ethnicity data should always be addressed. Specifically for information about patients/clients:
. Discussions with local community groups may be helpful to explain why data is being collected differently and how it will be used;
· Patients must be informed why the information is required, and should feel reassured that it will be handled confidentially;
Page 18 of 34
. Patients and clients should be asked for the information only once;
. Relatively small black and minority ethnic populations can be the most isolated and disadvantaged in terms of access to health care, and therefore collection and use should occur nationally, and not only in those areas with large black and minority ethnic populations. Specifically for workforce information:
· The NHS is committed to promoting a diverse workforce that is representative of the community it serves;
· The NHS is committed to ensuring that staff from black and minority ethnic groups are represented at all levels of the service.
SECTION 2 WHAT IS ETHNICITY?
2.1.1 An ethnic group is identified as people who share characteristics such as language, history, culture, upbringing, religion, nationality, geographical and ancestral origins and place. This provides the group with a distinct identity as seen both by themselves and by others. A person self-assigns his or her own ethnic group.
2.1.2 Essential features to help determine the meaning of 'ethnic group'. are:
. a long shared history;
. a common cultural tradition.
In addition some of the following may be present:
. either a common geographical origin or descent from a small number of common ancestors;
. a common language;
. a common literature;
. a common religion;
. a minority within a larger community.
2.1.3 It is important to distinguish the term "ethnic group" from ethnic origin, or racial origin, which is not self-assigned. The term "ethnic origin" is used in medicine to describe the genetic make-up of a person, and is important in, for example, tissue typing to identify organ donors.
2.1.4 Ethnic group is less easily specified, and is more subjective, than ethnic origin. Ethnic group is not determined by another individual, but is the individual's own perception of themselves in response to all the cultural and other factors making up ethnic group.
2.1.5 Ethnic category data collection is relevant to the whole population.
Page 19 of 34
2.1.6 Some areas of the country, particularly in inner cities, have quite large concentrations of people from black and minority ethnic groups. These might be from many different cultures and some communities will be long established and others relatively new. Small communities, whether in an area with mainly indigenous or with a large but homogenous ethnic minority, can feel especially isolated and lacking support in using the health service.
2.1.7 Equally, areas with a white population may contain white minorities, either British or European, susceptible to a higher incidence of particular conditions.
SECTION 3 INEQUALITIES IN HEALTH
3.1.1 Members of black and minority ethnic communities are not a homogenous group for health status, disease patterns or health behaviour. A number of studies have shown that there are significant health inequalities among people from black and minority ethnic communities. These inequalities relate to differences in disease prevalence, differential access to services and differential delivery of services. Many people from black and minority ethnic communities also experience other social conditions which interact with health inequality (lower income levels, poorer housing etc).
3.1.2 The most extensive survey on the health of minority ethnic groups ever carried out in England was undertaken in 1999. The 1999 Health Survey for England interviewed over 5,000 adults and 3,000 children from Black Caribbean, Indian, Pakistani, Bangladeshi, Chinese and Irish communities. The survey is fully representative of the minority ethnic groups covered and information about their health was obtained from a series of measurements and tests including a blood sample. The final results published early in 2001 confirm findings from previous research and contribute new knowledge which can be used by policy makers and service providers. Some of the key findings are given below.
Compared to the general population:
· Black Caribbean men showed higher rates for stroke, but had much lower rates of angina and heart attack
· Higher rates of ischaemic heart disease (IHD) and stroke were reported by Indian and Bangladeshi men, and higher rates of IHD by Irish women
· Higher rates of diabetes were reported by men from all the minority ethnic groups, and by women from minority ethnic groups (except the Irish)
· Black Caribbean and Pakistani women were more likely to be obese
· A much higher proportion of Bangladeshis may suffer from psychiatric illness.
Page 20 of 34
SECTION 4 USING ETHNIC CATEGORY DATA
4.1 Putting information in context
4.1.1 Ethnic category data collection requires three sets of information:
. A national demographic baseline
. Data about service users
· Data about workforce
4.1.2 A baseline of the population is needed against which, for example, to monitor the uptake of patient services, and to effectively target new or improved services. A baseline will also be a key indicator for setting targets on black and minority ethnic groups in the workforce. The 2001 Population Census to be carried out by the Office for National Statistics will establish a new demographic baseline.
4.1.3 The 2001 Census will ask about the ethnic category of those in the household. From the Census, aggregated statistical analyses of the population will be available by ethnic category and by area, from national to local level.
4.2 Local uses of information - patients/clients
4.2.1 At the local level, one of the primary purposes of collecting ethnic category data about patients/clients is to establish whether services are meeting the needs of different ethnic groups in the community. Analysis of ethnic category data should start with those people currently using the services provided. Reference to Census data will give rates of service uptake which can be used to highlight deficiencies in access to services and indicate where further investigation is required.
4.2.2 Information needs to be handled sensitively and with an understanding of the ways it should be used. Where appropriate, consideration should be given to involving patient and community groups in discussion of the results. This has the potential to stimulate awareness of health and race issues, and provide a vehicle for discussion with local community groups of the hidden barriers to health care. These may arise from health service practices or from a lack of awareness in black and minority ethnic groups of what services are available and why it is important to use them to prevent illness, promote health, or to gain treatment sooner rather than later in an illness. Obviously, care needs to be taken in presenting the data in a meaningful way to community groups, especially with regard to confidentiality matters.
Page 21 of 34
4.2.3 The benefits to patients of using local ethnic category data to can be seen in the following ways:
. Uptake of services - encouraging ethnic minorities to utilise all health services fully. There are wide variations in the uptake of health services across ethnic categories; language, religion, culture and sensitivity to gender have been quoted among possible reasons. Better ethnic category information will enable better management of the issue of uptake of services, perhaps in cooperation with local community groups. It is not only a question of making services available, but also of making them appropriate and accessible.
. Provision of services - targeting services towards the clinical problems particular to specific ethnic categories and to the environment in which the service is provided, including interpreters, religion, and diet. Ensuring that care is appropriate and acceptable, and sensitive to the needs of black and minority ethnic groups.
. Discharge procedures and outcome - for example by linking patterns of morbidity to specific black and minority ethnic groups.
4.3 National uses of information - patients/clients
4.3.1 The ethnic category of patients is one of the key fields in the Hospital Episode Statistics (HES) dataset, which provides national comparative data on healthcare delivery and performance in England. HES is an enormously rich and diverse data set and can be used in a wide variety of ways. At a high level the uses of HES fall broadly into seven groups:
· policy development, monitoring and evaluation
· resource acquisition and distribution
· accountability to the public and Parliament
· NHS local and national management
· performance management of the NHS
· public health support
· research and statistics
4.3.2 Analyses involving ethnic group data are likely to also have one or more of the following components:
· focus on specific conditions or treatments, either in detail or at high level
· trends over time
· variations across geographic areas
· variations across organisations
· focus on other health inequalities in areas such as age and gender
· focus on administrative information, eg length of stay and waiting times.
Page 22 of 34
4.4 Uses of information - workforce
4.4.1 Information on the ethnic origin of NHS staff is needed locally and nationally to ensure that sufficient staff are recruited in areas with high minority ethnic working population and to provide services that deal competently and sensitively with cultural issues. The Department of Health aims to recruit and retain, year on year, a more diverse workforce at every level of the NHS. As part of this, there are national equality targets on executive director posts and harassment and locally, there is a requirement to publish annual
equality statements. Ministers now require NHS employers to set local numerical targets for increasing BME representation in the workforce.
SECTION 5 CONFIDENTIALITY AND DATA PROTECTION
5.1.1 The Department of Health is firmly committed to safeguarding personal health information. As with all information that can be linked to an individual, a patient's or staff member's ethnic category must be treated as being strictly confidential and subject to national and local data protection requirements. Foremost amongst these requirements are those of the Data Protection Act 1998.
5.1.2 A key requirement of the Data Protection Act 1998 is that patients and staff are aware of the data collected about them and how these data will be used. It is essential to tell patients (or staff) the use to which the data will be put, and who has access to it. The explanation should be clear and reassuring and explain local uses of information as well as central uses (including the production of Hospital Episode Statistics (HES)).
5.1.3 When ethnic category data has been collected, the Data Protection Act 1998 requires that disclosure is allowed only to those who have authorised use for it. If the information is principally used for planning purposes it is likely to be used in aggregated statistical form only with no need for anyone other than information (or personnel) managers to have any knowledge of what response individual patients, clients (or staff) gave. However, some hospital services may wish to use the data to prompt screening and counselling, and as a trigger for nurses to ask questions about patient preferences. The organisation needs to be clear about all the uses to which it will put the data and ensure that these uses are conveyed to the patient/staff about whom the information is collected. In all cases, data must be stored and displayed in line with local requirements for security and confidentiality and the Data Protection Act 1998.
Page 23 of 34
SECTION 6 GOOD PRACTICE IN COLLECTING ETHNIC INFORMATION
6.1 Principles
6.1.1 Experience has shown that the collection of ethnic category data is most effective when the following key principles and critical success factors are considered:
. Senior management must be signed-up to the principles of collecting ethnic category information.
. All staff to be involved in collecting or handling ethnic category data should receive training or briefing before doing so.
. The principle of self-classification, as set out in 6.2, is important and helps to ensure uniformity of data quality.
. Staff who are familiar and comfortable with the issue of ethnicity are better able to answer queries and to convey the importance of the question.
. Where possible, the data should be collected once only to ensure that patients, clients and staff are not repeatedly asked for their ethnic category.
. The collection and handling of this information must conform to the usual requirements, including the Data Protection Act 1998. It is must be used for the purposes for which it is collected, and no other (see Section 5).
. Data is collected by organisations serving a localised area(s); any choice of more detailed ethnic categories should reflect the population demographics of that particular area(s).
6.2 Self-classification
6.2.1 A fundamental principle of ethnic category data collection is that the person to be classified is responsible for classifying themselves, and that their reply is their own perception of their ethnic category. This is important because how a person regards themselves influences their behaviour; therefore how the individual wishes to be regarded will influence their views and needs on the health care services to be provided. Classification by someone else is unreliable and unrepresentative. When dealing with patients or clients, it may be helpful to explain the idea of ethnic category verbally, and to stress that they will do the classification. There are some unavoidable exceptions to this rule, for instance classification of babies and young children by their parent or carer, and by close relatives or advocates for those who by reason of illness or disability are unable to understand or to be understood. These are discussed in 6.4 and 6.5.
Page 24 of 34
6.2.2 Unlike the ONS Census, the codes do not allow a person to select more than one category. If the patient/client or member of staff wants to tick more than one box, they should be asked whether this means that they are 'Mixed' or 'Any other ethnic category' depending on the categories chosen.
6.3 Collecting information from patients/clients
6.3.1 When collecting ethnic category data from patients or clients, it is best collected as part of normal admission procedures. Experience has shown that this quickly makes the process routine and unremarkable.
6.3.2 There are major differences between organisations with respect to function, geography, and information management methods. It follows that the best collection point and procedures should be chosen according to local admission practice. However, some points that have been found useful are noted below:
. Collecting the information at the same time as the bulk of the registration and admissions information is natural and efficient;
. Issuing the form with outpatient or pre-admission literature or appointments saves time at registration (although only if accompanied by clear notes explaining the rationale for collecting the data);
. Local procedures should ensure sensitive and confidential handling of information and avoid collecting personal data of any sort in crowded reception areas, or where the person behind can hear every word spoken;
· The verbal explanation by the person collecting the information is an important supplement in gaining the patient's understanding - the person collecting information should give a brief verbal description of the question and the layout, and invites the patient/client to point to or refer to one ethnic category;
· The verbal description is particularly important for non-literate patients;
· Interpreters should be used as needed;
· The form should state that provision of the information is on a voluntary basis (but see 6.6).
6.4 Issues around data collection: in a Mental Health environment
6.4.1 Experience has shown that the collection of ethnic category data in mental health services has proved difficult. There is no set time to collect this information as the administrative clerking may be dependent on the state of the incoming patient. Some units carry out this procedure on the ward after the initial assessment.
Page 25 of 34
6.4.2 The following approaches are advised:
. ask simple and clear questions;
. collect the information either
- on the ward after the initial assessment, or
- at subsequent assessments, or
- at assessment prior to discharge, or
- at some other time, possibly when a relative or advocate can help the patient.
6.5 Issues around data collection: those unable to respond or communicate
6.5.1 Most hospitals will have procedures for the situations in which it is difficult to obtain information from patients/clients; ethnic category data should not be treated any differently from other items of personal information that need to be recorded.
. The very young
- A parent or guardian should be invited to respond.
- A baby should not automatically be accorded the ethnic category of the mother. Computer systems should not have a default to mother's ethnic category.
- For children the same approach and procedures should be adopted as for treatment: when a child is capable of understanding what they are being asked, their views should be sought, involving the parents in the process.
. The temporarily confused or traumatised (including the unconscious) Whether confusion is due to emotional or physical stress, there will be instances when it is more appropriate to collect some data later in the admission.
· The permanently confused For patients suffering from dementia, experience suggests that ethnic category should be gathered from a relative, or an advocate.
· Those unable to understand English Existing policies and practices for the use of form translations, interpreters, link workers and advocates, with respect to obtaining informed consent for medical treatment is appropriate. It is inappropriate to translate the ethnic category question in isolation from other admission procedures.
Page 26 of 34
6.6 Issues around data collection: those unwilling to provide information
6.6.1 There is no obligation on patients/clients to respond to the ethnic category question and no pressure should be put on patients/clients to answer, or on staff to obtain an answer.
6.6.2 Experience indicates that when people are asked to respond to the ethnic category question the proportion of people who choose not to respond is small, particularly when they are given a verbal explanation of the reasons for the collection.
6.6.3 However, the proportion of non-respondents tends to be higher when the opt ion not to respond is shown as a possible reply. For patients/clients, it is therefore recommended that they are not shown or given this option, but that it is left instead to NHS staff to fill in the category "Not stated" if they do not give a response or are unlikely to do so.
6.6.4 Where ethnic category is a mandatory field (eg in Admitted Patient Care CDSs, Hospital Episodes Statistics, NHS Workforce Censuses) a "Not stated" category is provided to ensure that records can be 'complete' even when an ethnic category is not recorded. Staff must be clearly briefed that it is better to record a "Not stated" response than record what they judge to be a person's ethnic category.
6.6.5 Locally, managers may wish to monitor use of the "Not stated" category. If this response constitutes a high percentage, managers may wish to investigate reasons for this. The "Not stated" response will tend to be used less where there is clear evidence of support for the collection from senior management, and when staff are well-trained and understand the reasons for collecting information. The proportion of invalid and not stated codes together (whether using the current or new coding structure) form a component of the Data Quality Indicator (DQI) and high proportions will have an adverse effect on the overall DQI score.
6.7 Issues around data collection: collecting information over the telephone or from the visually impaired
6.7.1 Most patients/clients will be asked to provide information about their ethnic group by completing a form setting out the 16 ethnic categories. However, it may occasionally be necessary to collect this information over the telephone or to read out the available options for someone who is visually impaired.
6.7.2 In such circumstances it is imperative that the respondent is presented with the same information as other respondents. So, for example, it would be inappropriate to ask "What is your ethnic group?" without presenting the available options. Similarly, it is important not to overload the respondent with too much information at once – for example, by reading through the full list of 16 categories all in one go.
6.7.3 The ethnic group categories have two component parts and it is suggested that they are broken down in this way when the question is asked verbally. So, the questioner would
Page 27 of 34
first ask "to which of these ethnic groups do you feel you belong - white / mixed / Asian or Asian British / Black or Black British / Other ethnic categories" and then, once the respondent has identified their broad ethnic group, they would be asked "to which of the following cultural breakdowns within that group do you feel you belong ....".
6.7.4 It is important that the questioner provides some explanation about the question at each stage and speaks clearly and slowly enough for respondents to take on board the available options. It is also important that they are careful about emphasising the words appropriately, for example by saying "Black or Black British " in such a way as to make it clear to the listener that this is all one category.
6.8 Collecting information about staff
6.8.1 Collecting ethnic category data from staff will mainly be done by correspondence on recruitment. To encourage new staff to provide information about their ethnic category, the collection form should be easy to understand and complete, and should provide an explanation of why the information is being requested. The form should also state that provision of the information is on a voluntary basis.
SECTION 7 PROMOTING THESE MESSAGES LOCALLY THROUGH TRAINING
7.1 Introduction
7.1.1 Training is critical to the success of collecting ethnic category data. The training should not be limited to the introduction of the coding changes, but should become an integral part of new staff training programmes.
7.1.2 This guidance introduces a generic modular training pack for data collection staff, ie those responsible for asking the ethnic category question. It is intended for use by capable trainers to deliver the levels and styles of training appropriate to local needs, and is best used if the material is customised to reflect local circumstances.
7.2 Training Material
7.2.1 There are several components to collecting ethnic group information, including a need for strong ethnic awareness. This typically includes a definition of ethnicity, recognition of ethnic categories, examples of inequalities in health care, racial discrimination, communication difficulties and legal requirements.
7.2.2 The materials within the training pack provide an introduction to this topic as well as giving an overview of the new coding structure and suggesting ideas for good practice when collecting information.
7.2.3 The training material should be tailored to the specific requirements of local circumstances. Relevant local information and practices are better than the general
Page 28 of 34
nationwide examples in conveying to staff the benefits of ethnicity data collection. Also, it may be appropriate to reduce the level of training where ethnic awareness is already a routine component of staff training.
7.2.4 The material provided includes trainer materials, overheads, sample forms and suggested exercises. The core messages are intended to provide some understanding of the different cultural and health needs of ethnic categories and the reasons for the recent coding changes.
7.2.5 The material is designed to be flexible and delivered in different venues. Trainers should feel free to "pick and mix" the material to best suit local circumstances.
Page 29 of 34
ANNEX A - CLASSIFICATION OF ETHNIC CATEGORY DATA
Page 30 of 34
Ethnic Categories' framework*
These are the standard categories to be used for the collection of ethnic group information from 1 April 2001.
Notes on this framework are given overleaf
Ethnic Categories* Codes Ethnic Classifications
(Annex 2) included within category
a. White
British
Irish
Any other White background
-
A
B
C
01
02
03-19, 31-39
b. Mixed
White and Black Caribbean
White and Black African
White and Asian
Any other mixed background
-
D
E
F
G
21
22
23
24-29
c. Asian or Asian British
Indian
Pakistani
Bangladeshi
Any other Asian background
-
H
J
K
L
41
42
43
44-51, 57,59
d. Black or Black British
Caribbean
Afrcan
Any other Black background
-
M
N
P
61
62
63-65,66,69
e. Other ethnic Groups
Chinese
Any other ethnic group
-
R
S
81
82-86,87,89
f. Not Stated
Not stated
-
Z
* Based on 2001 Census
Notes on the ethnic categories' framework
1 All clients/patients/ staff are to be classified under one or other of the 17 categories above. This is to be the national standard.
Page 31 of 34
2 These new codes facilitate differentiation between the old ethnic codes based on the 1991 Census (which will need to be retained for a transitional period) and the new ones.
3 It is accepted that the categories are not exclusive in all cases. This is a feature of the census categories as they stand, and this reinforces the importance of presenting respondents with the Census category list in full in exactly the order presented in Annex 1 to drive the main category. In this way, the categories will be comparable with the Census data.
Page 32 of 34
Ethnic Classifications* - Optional detailed framework
The detailed framework of ethnic coding given on the following pages is derived from the way in which the Office for National Statistics will classify Census responses. In what follows, some of the groups exist nationally only as one group in the Annex 1 list (eg "British"). These are referenced as [A*] etc, the star being a "wild card" character which is not required for national collection. These more detailed categories are purely optional and for local use in any way or not at all, provided that any such use does not cut across the national standard as set out in Annex 1. See also note 3 to Annex 1, which implies that the classification should be done in a "top down" fashion starting with the 16 main ethnic categories.
* Based on 2001 Census
DESCRIPTION Proposed code
WHITE GROUP
01 British, Mixed British [A*]
02 Irish [B*]
03 English [CA]
04 Scottish [CB]
05 Welsh [CC]
38 Northern Irish [C2]
06 Cornish [CD] CORNISH
07 Cypriot (part not stated) [CE]
08 Greek [CF]
09 Greek Cypriot [CG]
10 Turkish [CH]
11 Turkish Cypriot [CJ]
12 Italian [CK]
13 Irish Traveller [CL]
14 Traveller [CM]
15 Gypsy/Romany [CN]
16 Polish [CP]
17 All republics which made up the former USSR [CQ]
18 Kosovan [CR]
19 Albanian [CS]
31 Bosnian [CT]
32 Croatian [CU]
33 Serbian [CV]
34 Other republics which made up the former Yugoslavia [CW]
36 Mixed white [CX]
37 Other white European, European unspecified, European mixed [CY]
39 Other white, white unspecified [C3]
MIXED GROUPS
21 White and Black Caribbean [D*]
Page 33 of 34
22 White and Black African [E*]
23 White and Asian [F*]
24 Black and Asian [GA]
25 Black and Chinese [GB]
26 Black and White [GC]
27 Chinese and White [GD]
28 Asian and Chinese [GE]
29 Other Mixed, Mixed Unspecified [GF]
ASIAN or ASIAN BRITISH GROUP
41 Indian or British Indian [H*]
42 Pakistani or British Pakistani [J*]
43 Bangladeshi or British Bangladeshi [K*]
44 Mixed Asian [LA]
45 Punjabi [LB]
46 Kashmiri [LC]
47 East African Asian [LD]
48 Sri Lanka [LE]
49 Tamil [LF]
50 Sinhalese [LG]
51 British Asian, [LH]
57 Caribbean Asian [LJ]
59 Other Asian, Asian unspecified [LK]
BLACK or BLACK BRITISH GROUP
61 Caribbean [M*]
62 African [N*]
63 Somali [PA]
64 Mixed Black [PB]
65 Nigerian [PC]
66 Black British [PD]
69 Other Black, Black unspecified [PE]
OTHER ETHNIC GROUPS
81 Chinese [R*]
84 Vietnamese [SA]
85 Japanese [SB]
86 Filipino [SC]
87 Malaysian [SD]
89 Any Other Group [SE]
(99) Not stated [Z*]
Note: Classification "99" is not included on the census code list and is included here for completeness.
Notes on the Ethnic Classifications* - Optional detailed framework
Page 34 of 34
There are 25 categories within group C - "any other white background" - but only 23 codes are available for the local field - since I, O and Z cannot be used. We are therefore using a number for the last two categories in the ONS listing - lines 38 and 39 are therefore coded as C2 and C3 above.
This list excludes the codes used in the Census when respondents enter a religion having recorded "other". It is suggested that these should not be included in NHS ethnic category recording.
 Are you lost? Go to Main Index and Home Page |