Transcript Definition of Targeted Population: Experience from Great

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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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Our choices will be dependent on the context
and purpose of our work, and the demographic
and political characteristics of the populations
under study
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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
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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
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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)
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Examination of census classifications of race and ethnicity as well
as other relevant factors such as place of birth and nationality
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Countries include: Britain, USA, New Zealand, Canada, India, South
Africa, Sri Lanka, India and Ghana
Census Classifications of Race and
Ethnicity
England and Wales
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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 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)
..……………………….
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
….……………………
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
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A question on race since the first census in 1790
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Our analysis begins from 1850
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In 1870 Chinese and Indian groups were added to white, black
and mulatto
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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
2000
Black, African American,
Negro
Terms used in the last few decades to describe
African populations in health research (with
Agyemang)
1.
2.
3.
4.
5.
6.
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
Conclusions from the classification
project
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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
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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
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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
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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
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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=getdocument&doi=10.1371/journal.pmed.0030044)
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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
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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
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Recording ethnicity on birth and death
certificates
Ethnic monitoring of service utilisation
Conclusions
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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
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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
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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
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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