Conceptualising and operationalising ethnicity

in epidemiological and public health settings

Raj Bhopal

Bruce and John Usher Professor of Public Health, University of Edinburgh & honorary consultant in public health, Lothian Health Board&Chairman, Steering Committee of the National Resource Centre for Ethnic Minority Health, Scotland

With thanks to Taslin Rahemtulla, University of Edinburgh

Questions to be addressed

In using ethnicity in epidemiology and public health, what are we trying to achieve?

What would we lose without these concepts? How can we conceptualise and

operationalise these concepts to help achieve our goals?

Inequalities in health

the concepts of migration, ethnicity and race imply major differences in environment and culture, and some differences in biology, which inevitably

lead to inequalities in health, that are easily demonstrated by variables such as

country of birth, ethnicity and race we need to tackle these inequalities

What would we lose without such data? Example Smoking is the number one public health problem in

Europe Smoking prevention and cessation programs require

data on prevalence to set priorities and evaluate effectiveness

Newcastle heart project data provided vital insights

Newcastle Heart Project: Smoking prevalence (%)

Indian Pakistani Bangladeshi European

Men (South Asian combined, 33%

14 32 57 33

Women(South Asian combined, 3%)

1 5 2 31

Lessons from these data

Such unique important differences cannot be ignored in public health programmes.

Such differences cannot be quantified except by using the concepts of migration, race or ethnicity

Minority ethnic groups are extremely heterogeneous

Change occurs tremendously fast after migration We need such data-so we need to understand our

concepts

Race &Ethnicity

Race

The group (sub-species in traditional scientific usage) a person belongs to as a result of a mix of physical features such as skin colour and hair texture, which reflect ancestry and geographical origins

Race was traditionally identified by others but is increasingly self-identified

The importance of social factors in the creation and perpetuation of racial categories has led to the concept broadening to include a common social and political heritage

Race and ethnicity are increasingly used as synonyms causing some confusion and leading to the hybrid terms race/ethnicity

Ethnicity

The group a person belongs to as a result of a mix of cultural and other factors including language, diet, religion, ancestry, and also physical textures traditionally associated with race

Ethnicity is usually self identified but is sometimes identified by others

Increasingly, the concept is being used synonymously with race but the trend is pragmatic rather than scientific

Criteria for a good epidemiological variable Impact on health in individuals and population Be measurable accurately Differentiate populations by disease or health Differentiate populations in some underlying

characteristic relevant to health e.g. income, childhood circumstance, genetic inheritance, or behaviour relevant to health.

Generate testable aetiological hypotheses, and/or help in developing health policy and health care

and/or help prevent and control disease

Fundamental problems with race and ethnicity in epidemiology the difficulties of measurement, the heterogeneity of the populations being studied, ambiguity of the research purpose of the research

e.g. is it for aetiology or policy ethnocentricity affecting the interpretation and use of

data and, difficulties of implementing complex concepts

e.g. developing population group categories

Measuring ethnicity

Skin colour is mainly genetically determined, but its measurement is subjective, imprecise, and unreliable and it is a poor proxy for either race or ethnicity.

Country of birth is objective but crude. People of many ethnic or racial groups might be born in a particular country. Immigrants' children are not identified by this method.

Parents’ and grandparents' national origin or country of birth is rigid, ignores current lifestyle or self perception, and yields a large heterogeneous "mixed" group

Measuring ethnicity 2

Names can identify people’s origins e.g. China and the Indian subcontinent

Self classified ethnicity or race may vary over time

Algorithms e.g. father's surname, mother's maiden name, place of birth, self assessed ethnic identity, and stated ethnicity of grandparents. The method requires much data.

Making choices on measurement of ethnicity Our choices will be dependent on the context

and purpose of our work, and the demographic and political characteristics of the populations under study

Generally, the finer the disaggregation, the more valuable the analysis

Disaggregation will be limited by population/study size

In limited circumstances such disaggregation is neither necessary nor valuable

Contexts and purposes

Political Health policy Health care planning Clinical care Surveillance and monitoring Health services research Causal research

All need ethnicity and race classifications

From concept to category to classification To put race and ethnicity into operation we

need categories, which comprise a classification

Investigators should explain their understanding of the concepts of race or ethnicity and how this relates to the classification they use

Usually, the classification derives from the census

Census classification project (ongoing, with Taslin Rahemtulla) Examination of census classifications of race and ethnicity as well

as other relevant factors such as place of birth and nationality

Countries include: Britain, USA, New Zealand, Canada, India, South Africa, Sri Lanka, India and Ghana

Census Classifications of Race and EthnicityEngland and Wales In every census since 1841 a question has been

asked about a person’s place of birth and/or nationality.

A direct question on ethnic origin was not included until the 1991 census

Ethnic group question in Britain derived from extensive consultations and debate with ethnic minority organisations

Devising an Ethnicity QuestionSource: Ian White, Office of National Statistics (2003)1975 Test Question· White (European descent)· West Indian· Indian, Pakistani or Bangladeshi· West African· Arab· Chinese· Other (describe)………………………….· Mixed descent (describe)..……………………….

Please tick the appropriate box. White. Black – Caribbean. Black – African. Black – otherplease describe…………….…………. Indian. Pakistani. Bangladeshi. Chinese. Any other ethnic group(please describe below….……………………

England and Wales 1991 Census Ethnic Group Question

England: Comparison of the 1991 and 2001 Census ethnic groupings

1991 Census 2001 Census

White British, Irish, Any other white background

Black Caribbean, Black African, Black other

Caribbean, African, Any other Black background

Indian, Pakistani, Bangladeshi Indian, Pakistani, Bangladeshi any other Asian background

Chinese Chinese

Any other ethnic group Any other ethnic group

No ‘Mixed’ category White and Black Caribbean, White and Black African, White and Asian, Any other mixed background

Birth in the UK by Ethnic Group, 2001 England and Wales Census.Source: Ian White, Office of National Statistics (2003)

United States

A question on race since the first census in 1790

Our analysis begins from 1850

In 1870 Chinese and Indian groups were added to white, black and mulatto

Not until the 1970 census however were questions on the tribe of American Indians and Hispanic/Latino ethnicity asked.

USA Census: Name for Black population

Census Year Terms used

1850, 1860, 1870, 1880, 1890

Black

1900, 1910, 1920, 1930, 1940

No options

1950, 1960 Negro

1970 Negro or Black

1980, 1990 Black or Negro

2000Black, African American,

Negro

Terms used in the last few decades to describe African populations in health research (with Agyemang)1. Negro (Negroid) - Defined populations by physical features in

the distant past. Considered inappropriate and derogatory. Abandon.

2. Black - Describes heterogeneous populations. It may signify all non-White minority populations. Use with caution

3. Black African - Signifies sub-continental origin. Avoid if possible .

4. African Caribbean – often Inaccurate as it is not restricted to those from the Caribbean islands, otherwise good..

5. African American – extremely heterogeneous as used 6. African - Describes heterogeneous populations This term is

currently the preferred prefix for more specific categories, as African Nigerian, African Kenyan etc. Use on its own should be avoided

Conclusions from the classification project At any point in time, a variety of classification

systems are in place Infrequently, conceptual shifts take place Current racial and ethnic classifications are more

suited for policy & planning rather than scientific purposes

So to understand what is going on the need to consider the policy, legal and health care set up

From concept to category to labels and then understanding Categories are merely labels, and a first step to

understanding and defining a person’s ethnicity or race Such labels are shorthand for potentially important

information Researchers should describe the characteristics of the

populations they are referring to. For example, the label “South Asian” should not be used if the population referred to is Bangladeshi-remember the heterogeneity.

Popular terminology for ethnic minority populations (Asians, Blacks, Chinese etc.) may suffice for everyday conversation or political exchange but is too crude for research, and when used needs accurate definition

These challenging first principles need to be put into practice by researchers and practitioners

Data and effectiveness of interventions Data are needed for increasing awareness

and stimulating policy and action to improve the health of ethnic minority groups

There is a particular gap in the evidence base showing effectiveness of interventions by ethnic group

But massive challenges in research

Some challenges for research on ethnicity, race and health Ensuring the quality of data, particularly in

cross-cultural comparability Maximising completeness of data collection Avoiding misinterpretation of differences that

are due to confounding variables Proper interpretation of associations as causal

or non-causal European researchers have, largely, avoided

the challenge

Evidence to underpin interventions by ethnic group: studies showing the gap 1 Ranganathan and Bhopal showed that while 15 of

31 North American cardiovascular cohort studies provided data by ethnic group, the corresponding figures in Europe were zero out of 41 (PLoS Jan 3 2006, http://medicine.plosjournals.org/perlserv/?request=get-

document&doi=10.1371/journal.pmed.0030044)

Bartlett and colleagues reported that eight of 47 trials on statins were specific about ethnicity-all eight were USA based (Heart 2003; 89:327-8)

Evidence base for public health initiatives in the field of minority ethnic health: the need A focused research programme is needed As a minimum, studies on general

populations ought to include people from minority ethnic groups-meta-analyses will allow analysis by ethnic group over time

Building up a valid database of this kind will be a multi-billion pound endeavour and will take 10 - 20 years

This will be an international exercise

Bridging the gap: other longer term solutions

Recording ethnicity on birth and death certificates

Ethnic monitoring of service utilisation

Conclusions

The ethical justification for collecting data by ethnicity and health is health improvement

People setting up health databases and research studies need to make choices on which aspects of race and ethnicity are to be captured.

These choices are governed by the purposes for which the data are being collected.

The method of data collection on race or ethnicity – whether self-report or some other indicator such as name and the classification can then be chosen.

The interpretation and utilisation of the data are dependent on these choices.

Conclusions

There are 3 main approaches to collecting ethnicity and race data i.e.

self-assessment or assessment by another on the basis of relevant data

or assessment by another on the basis of observation.

The last is not acceptable in contemporary societies, though normal practice in the past.

Conclusions

The data system needs to be designed to record, retrieve and analyse data to meet the specified purposes

It should include information on the underlying concepts and methods

The users need to interpret the data and come to valid explanations for differences and similarities, or at least valid questions that guide interpretation.

Over-interpretation, particularly reaching unsubstantiated conclusions that differences arise from genetic factors, needs to be avoided.

Further reading

Gill PS, Kai J, Bhopal RS, Wild SH. Health Needs Assessment for Black and Ethnic Minority Groups 2002 (book chapter - in press, available online at http://hcna.radcliffe-oxford.com/bemgframe.htm

Bhopal R. Glossary of terms relating to ethnicity and race: for reflection and debate. Journal Epidemiology & Community Health 2004;58:441-45.

Agyemang C., Bhopal, R., Bruijnzeels M. Negro, Black, Black African, African Caribbean, African American or what? Labelling African origin populations in the health arena in the 21st century. JECH. 2005; 59:1014-1018.

Senior P A, Bhopal R S. Ethnicity as a variable in epidemiological research. Br Med J l994;309:327-330