PRIMIS Partnerships For Progress March 2004

Recording Quality Ethnicity Data

Dr Kambiz Boomla

Recording Quality Recording Quality Ethnicity DataEthnicity Data

Dr Kambiz BoomlaSenior LecturerCentre for General Practice & Primary CareQueen Mary University of London

Content of presentationContent of presentation• policy background and legislationpolicy background and legislation• racism direct and institutional/the racism direct and institutional/the

McPherson reportMcPherson report• local contexts and targetslocal contexts and targets• why record ethnicitywhy record ethnicity• group exercisegroup exercise• how to recordhow to record

The policy context – why The policy context – why collect ethnic category collect ethnic category information?information?• The Race Relation Amendment ActThe Race Relation Amendment Act• The NHS PlanThe NHS Plan• NHS workforceNHS workforce• To track changes in morbidity and To track changes in morbidity and

mortalitymortality• Improving public health by developing Improving public health by developing

services appropriate to the needs of services appropriate to the needs of different ethnic minoritiesdifferent ethnic minorities

Why we have to do this:Why we have to do this:• Race Relations Act 1976 says:Race Relations Act 1976 says:• Direct racial discrimination is treating a Direct racial discrimination is treating a

person less favourably than another on the person less favourably than another on the grounds of race. grounds of race.

• Indirect racial discrimination means Indirect racial discrimination means applying a requirement or condition which applying a requirement or condition which although applies to all, can only be met and although applies to all, can only be met and benefited by a considerably smaller benefited by a considerably smaller proportion of a minority group and cannot proportion of a minority group and cannot be justified other than on racial groundsbe justified other than on racial grounds

The Race Relations The Race Relations (Amendment) Act 2000(Amendment) Act 2000• Came into force on 1Came into force on 1stst April 2001 April 2001• Duty on all public bodies including GP practices Duty on all public bodies including GP practices

to promote race equality and have due regard to promote race equality and have due regard to race equality in carrying out their functionsto race equality in carrying out their functions

• Extends the provision of the act to cover indirect Extends the provision of the act to cover indirect discrimination (failure to provide equitable discrimination (failure to provide equitable services to black and minority ethnic groups)services to black and minority ethnic groups)

• Places a statutory duty on the public services to Places a statutory duty on the public services to eliminate unlawful racial discrimination and to eliminate unlawful racial discrimination and to consider the race equality implications in all of consider the race equality implications in all of the policies that shape their operationsthe policies that shape their operations

The Human Rights Act 2000The Human Rights Act 2000• Prohibits inhuman and degrading Prohibits inhuman and degrading

treatment and prohibits discriminationtreatment and prohibits discrimination• Likely to apply to inability of patients Likely to apply to inability of patients

in the health service to communicate in the health service to communicate effectively with practitioners, or to do effectively with practitioners, or to do so in inappropriate ways, e.g. using so in inappropriate ways, e.g. using children to interpret during a children to interpret during a consultationconsultation

Direct discrimination/direct Direct discrimination/direct racismracism

• Refusal to provide a serviceRefusal to provide a service (Section (Section 20 of the race relations Act 1976) makes it 20 of the race relations Act 1976) makes it unlawful for anyone concerned with the unlawful for anyone concerned with the provision of healthcare services to provision of healthcare services to discriminate on racial grounds bydiscriminate on racial grounds by refusing refusing or deliberately omittingor deliberately omitting to provide the to provide the services; or as regards quality; or the services; or as regards quality; or the manner in which, or the terms on which, manner in which, or the terms on which, they are provided.they are provided.

Institutional racism and the Institutional racism and the McPherson reportMcPherson report• ‘‘The collective failure of an organisation to The collective failure of an organisation to

provide a proper service to people because provide a proper service to people because of their colour, culture or ethnic origin.of their colour, culture or ethnic origin.

• It can be seen or detected in processes, It can be seen or detected in processes, attitudes and behaviour which amounts to attitudes and behaviour which amounts to discrimination.discrimination.

• This is through unwitting pressure, This is through unwitting pressure, ignorance, thoughtlessness and stereotyping ignorance, thoughtlessness and stereotyping which disadvantage minority ethnic people.’which disadvantage minority ethnic people.’

Questions arising from the Questions arising from the Macpherson reportMacpherson report• Are we acting fairly?Are we acting fairly?• Does the service we provide reach all the Does the service we provide reach all the

communities it’s meant for and does it communities it’s meant for and does it meet their needs?meet their needs?

• Are we providing the same professional Are we providing the same professional standard in every situation?standard in every situation?

Topical example: death of Topical example: death of Rocky Bennett in psychiatric Rocky Bennett in psychiatric unitunit• Sir John Blofeld’s report:Sir John Blofeld’s report:

– ““The views of our witnesses were unanimous, institutional The views of our witnesses were unanimous, institutional racism is present throughout the NHS. Final responsibility racism is present throughout the NHS. Final responsibility lies fairly and squarely with the Department of Health”lies fairly and squarely with the Department of Health”

– Staff themselves not racist, and were found kind, taking Staff themselves not racist, and were found kind, taking Rocky to football matches, but were unaware of the Rocky to football matches, but were unaware of the “corrosive and cumulative effect of racist abuse on a black “corrosive and cumulative effect of racist abuse on a black patient”, seeing black patients as “more aggressive, patient”, seeing black patients as “more aggressive, alarming and difficult to treat”alarming and difficult to treat”

• Out of 100,000 black people, 28 end up in secure Out of 100,000 black people, 28 end up in secure unitsunits

• Out of 100,000 white people, only 4 end up in secure Out of 100,000 white people, only 4 end up in secure units.units.

• Without ethnic monitoring, these figures cannot be Without ethnic monitoring, these figures cannot be revealed and explanations cannot be soughtrevealed and explanations cannot be sought

Local contextsLocal contexts• By November 2003 each PCT meant to By November 2003 each PCT meant to

have Ethnic Monitoring Action Planhave Ethnic Monitoring Action Plan– Identify various pilot projects and Identify various pilot projects and

methodologiesmethodologies– Have a robust and extensive staff Have a robust and extensive staff

training plan based on DoH “Ethnic training plan based on DoH “Ethnic Monitoring Training Pack”Monitoring Training Pack”• http://www.doh.gov.uk/ethnicity2001guidance/index.http://www.doh.gov.uk/ethnicity2001guidance/index.htmhtm

– Clear objectives set for use of Clear objectives set for use of information within service planning and information within service planning and deliverydelivery

targets, targets, targets – east targets, targets, targets – east LondonLondon• by March 2004, 50% of all directly by March 2004, 50% of all directly

provided and GP practices must reach provided and GP practices must reach 75% valid ethnic coding – not met75% valid ethnic coding – not met

• by March 2005, 100% of practices by March 2005, 100% of practices must reach 75% valid ethnic codingmust reach 75% valid ethnic coding

• by March 2006, 100% of practices by March 2006, 100% of practices must reach 95% valid ethnic codingmust reach 95% valid ethnic coding

House of Lords definition of House of Lords definition of ethnic groupethnic groupEssential featuresEssential features• A long shared historyA long shared history• A common cultural traditionA common cultural tradition

In addition, some of the following may be In addition, some of the following may be presentpresent::

• A common geographical origin from a small number A common geographical origin from a small number of common ancestorsof common ancestors

• A common languageA common language• A common literatureA common literature• A common religionA common religion

How ethnicity differs from How ethnicity differs from culture and raceculture and race

CChhaarraacctteerriissttiiccss DDeetteerrmmiinneedd bbyy....

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GGrroouupp iiddeennttiittyy,, ssoocciiaall pprreessssuurreess ffrroomm tthhee ggrroouupp lliinnkkeedd wwiitthh aa ppssyycchhoollooggiiccaall nneeeedd ttoo bbeelloonngg

CCuullttuurree IIddeeaass,, bbeelliieeffss,, vvaalluueess,, kknnoowwlleeddggee,, bbeehhaavviioouurr,, aattttiittuuddee,, ttrraaddiittiioonnss sshhaarreedd bbyy aa ggrroouupp

SSoocciiaall eexxppeerriieenncceess aanndd eedduuccaattiioonn tthhrroouugghh uuppbbrriinnggiinngg aanndd cchhooiiccee

RRaaccee VViissiibbllee pphhyyssiiccaall aappppeeaarraannccee

GGeenneettiicc aanncceessttrryy

Inequalities in healthInequalities in health• 46% increased CHD mortality in South Asian 46% increased CHD mortality in South Asian

womenwomen• 110% increased of CVA mortality in African-110% increased of CVA mortality in African-

Caribbean womenCaribbean women• Suicide amongst young South Asian women Suicide amongst young South Asian women

300% greater than majority population300% greater than majority population• 300% increased prevalence of, and mortality 300% increased prevalence of, and mortality

from Diabetes in Asian populationfrom Diabetes in Asian population

But - But - • Above view also present ethnic Above view also present ethnic

minorities as the disadvantaged minorities as the disadvantaged problem ethnicitiesproblem ethnicities

• Many disease more common in Many disease more common in whiteswhites– Breast cancer and some other cancersBreast cancer and some other cancers

Why keep records of a Why keep records of a patient’s patient’s ethnic group?ethnic group?We want to ensure that we are providing an We want to ensure that we are providing an

appropriate and accessible service for the appropriate and accessible service for the whole of the communitywhole of the community

By……By……

By …By …

• Assessing who is using the service Assessing who is using the service nownow

• Identifying the health needs and patterns Identifying the health needs and patterns of illness among all ethnic groupsof illness among all ethnic groups

• Highlighting any gaps in service provisionHighlighting any gaps in service provision

By…By…

• Measuring the outcome of the service Measuring the outcome of the service response to these highlighted gapsresponse to these highlighted gaps

• Developing staff awareness of, and Developing staff awareness of, and response to, the individual needs of response to, the individual needs of different ethnic groupsdifferent ethnic groups

Equality vs equity in service Equality vs equity in service provisionprovision• Providing a service that treats everyone Providing a service that treats everyone

equally assumes everyone is the sameequally assumes everyone is the same• Equity in service provision means delivering Equity in service provision means delivering

a service that recognises, respects and a service that recognises, respects and meets the needs of the individualmeets the needs of the individual

• Providing an equitable service is not about Providing an equitable service is not about giving people the same service, it is about giving people the same service, it is about them receiving a comparable service that them receiving a comparable service that meets their needsmeets their needs

Group exerciseGroup exercise• Working as a group:Working as a group:

– Think of ways in which information Think of ways in which information about ethnic groups could be used to about ethnic groups could be used to improve services within your areaimprove services within your area

– Think of barriers to recording such Think of barriers to recording such information in practicesinformation in practices

Ethnic monitoring Ethnic monitoring categories categories (1991 Census)(1991 Census)

00 WhiteWhite 9S19S111 Black CaribbeanBlack Caribbean 9S29S2

22 Black AfricanBlack African 9S39S3

33 Black – otherBlack – other 9S49S4

44 IndianIndian 9S69S6

55 PakistaniPakistani 9S79S7

66 BangladeshiBangladeshi 9S89S8

77 ChineseChinese 9S99S9

88 Other ethnic groupOther ethnic group 9SJ9SJ

99 Did not answerDid not answer 9SD9SD

Ethnic monitoring Ethnic monitoring categoriescategories(2001 Census) 16 + 1(2001 Census) 16 + 1

WhiteWhite BritishBritish AA 9i09i0IrishIrish BB 9i19i1Any other White backgroundAny other White background CC 9i29i2

MixedMixed White and Black CaribbeanWhite and Black Caribbean DD 9i39i3White and Black AfricanWhite and Black African EE 9i49i4White and AsianWhite and Asian FF 9i59i5Any other mixed backgroundAny other mixed background GG 9i69i6

Asian or Asian BritishAsian or Asian British IndianIndian HH 9i79i7PakistaniPakistani JJ 9i89i8BangladeshiBangladeshi KK 9i99i9Any other Asian backgroundAny other Asian background LL 9iA9iA

Black or Black BritishBlack or Black British CaribbeanCaribbean MM 9iB9iBAfricanAfrican NN 9iC9iCAny other Black backgroundAny other Black background PP 9iD9iD

Other ethnic groupsOther ethnic groups ChineseChinese RR 9iE9iEAny other ethnic groupAny other ethnic group SS 9iF9iF

Not statedNot stated Not statedNot stated ZZ 9iG9iG

SubcategoriesSubcategories

So how to do it?So how to do it?• New patient ethnic profiling formNew patient ethnic profiling form• Include ethnicity field in new patient Include ethnicity field in new patient

check templatescheck templates• Include ethnicity field in chronic Include ethnicity field in chronic

disease management templates in disease management templates in QOF of new contractQOF of new contract

• Include audit of 9i codesInclude audit of 9i codes

Why can data quality be Why can data quality be poorpoor• Patchy use of race information at local Patchy use of race information at local

level – so people think the information level – so people think the information they record is not being usedthey record is not being used

• Patients not wanting to categorise Patients not wanting to categorise themselves because of uncertainty about themselves because of uncertainty about why information requestedwhy information requested

• Data collectors feeling uncertain and Data collectors feeling uncertain and thinking collecting information emotive thinking collecting information emotive issueissue

Good practice in collecting Good practice in collecting datadata• Senior management signed up to Senior management signed up to

principlesprinciples• All staff trainedAll staff trained• Principles of self classification Principles of self classification

recognisedrecognised• Staff comfortable and can answer Staff comfortable and can answer

patient queriespatient queries• Data only collected onceData only collected once

Special issuesSpecial issues• The very youngThe very young

– Parent can respondParent can respond– Baby not automatically categorised same as Baby not automatically categorised same as

mothermother• Permanently confusedPermanently confused

– Relative can assignRelative can assign• Those not understanding EnglishThose not understanding English

– Form translation, use of linkworkers/advocatesForm translation, use of linkworkers/advocates

• http://www.doh.gov.uk/ethnicity2001guidance/ethnicguidance.http://www.doh.gov.uk/ethnicity2001guidance/ethnicguidance.pdfpdf

Recording Quality Recording Quality Ethnicity DataEthnicity Data

Dr Kambiz BoomlaSenior LecturerCentre for General Practice & Primary CareQueen Mary University of London