Conceptualising and operationalising ethnicity in epidemiological and public health settings

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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

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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

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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

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Newcastle Heart Project Smoking prevalence ()
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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

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Race Ethnicity
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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

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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

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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

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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

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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

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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.

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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

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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

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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

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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

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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

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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)
• ...

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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
• .

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

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USA Census Name for Black population
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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

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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

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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

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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

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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

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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)

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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

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Bridging the gap other longer term solutions

• Recording ethnicity on birth and death
  certificates
• Ethnic monitoring of service utilisation

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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.

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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.

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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.

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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