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Conceptualising and operationalising ethnicity in epidemiological and public health settings

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Title: Conceptualising and operationalising ethnicity in epidemiological and public health settings


1
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

2
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?

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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

7
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

8
Newcastle Heart Project Smoking prevalence ()
9
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

10
Race Ethnicity
11
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

12
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

13
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

14
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

15
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

16
Measuring ethnicity 2
  • Names can identify peoples 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.

17
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

18
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

19
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

20
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

21
Census Classifications of Race and Ethnicity
  • England and Wales
  • In every census since 1841 a question has been
    asked about a persons 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

22
Devising an Ethnicity Question Source 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)
  • ..……………………….

23
England and Wales 1991 Census Ethnic Group
Question
  • Please tick the appropriate box
  • . White
  • . Black Caribbean
  • . Black African
  • . Black other
  • please describe
  • …………….…………
  • . Indian
  • . Pakistani
  • . Bangladeshi
  • . Chinese
  • . Any other ethnic group
  • (please describe below
  • ….……………………

24
England Comparison of the 1991 and 2001 Census
ethnic groupings
25
Birth in the UK by Ethnic Group, 2001 England and
Wales Census. Source Ian White, Office of
National Statistics (2003)
26
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.

27
USA Census Name for Black population
28
Terms used in the last few decades to describe
African populations in health research (with
Agyemang)
  • Negro (Negroid) - Defined populations by physical
    features in the distant past. Considered
    inappropriate and derogatory. Abandon.
  • Black - Describes heterogeneous populations. It
    may signify all non-White minority populations.
    Use with caution
  • Black African - Signifies sub-continental origin.
    Avoid if possible .
  • African Caribbean often Inaccurate as it is not
    restricted to those from the Caribbean islands,
    otherwise good..
  • African American extremely heterogeneous as
    used
  • 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

29
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

30
From concept to category to labels and then
understanding
  • Categories are merely labels, and a first step to
    understanding and defining a persons 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

31
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

32
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

33
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/?r
    equestget-documentdoi10.1371/journal.pmed.00300
    44)
  • Bartlett and colleagues reported that eight of 47
    trials on statins were specific about
    ethnicity-all eight were USA based (Heart 2003
    89327-8)

34
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

35
Bridging the gap other longer term solutions
  • Recording ethnicity on birth and death
    certificates
  • Ethnic monitoring of service utilisation

36
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.

37
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.

38
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.

39
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
    200458441-45.
  • 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 591014-1018.
  • Senior P A, Bhopal R S. Ethnicity as a variable
    in epidemiological research. Br Med J
    l994309327-330
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