Aziz Sheikh

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Aziz Sheikh University of Edinburgh Cross-cultura
l competence in Health Social
Research Leicester, 24 April 2006

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• Why is the subject important?
• Changing demography
• Persistent health inequalities
• Scientific interest
• Legal and policy developments
• Extent of under-recruitment
• Barriers to recruitment
• Short- and long-term strategies for enhancing
  recruitment
• Conclusions

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Ethnic minority populations in 1991 and 2001
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Poor health by sex and ethnic group, 2001
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Disproportionate asthma morbidity

• Compared with Whites
• Blacks x2 risk of hospital admission
• South Asians x3 risk of hospital admission

Netuveli et al. Lancet 2005 365312-17
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Legislative and policy developments

• Human Rights Act (Article 14)
• Race Relations Act 1976 (Amendment) Act 2000
• Eliminate racial discrimination
• Promote equality of opportunity
• Promote good race relations
• NHS Patients Charter
• You have the right to choose whether or not you
  want to take part in medical research

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National Institutes of Health

• These NIH guidelines require that women and
  members of minority groups and their
  sub-populations be included in any NIH-supported
  biomedical and behavioral clinical research
  project involving human subjects
• Cost is not an acceptable reason for exclusion,
  except when the research would duplicate data
  already available from other sources

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Mason et al. BMJ 2003 326 1244-45
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Sheikh et al. BMJ 2004 329 87-88
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Location of trial Total Reporting of ethnicity Reporting of ethnicity
Location of trial n Yes () No ()
US 59 23 (39) 36 (61)
Europe 95 7 (7) 88 (93)
Total 154 30 (19) 124 (81)
US v Europe RR5.3 95CI 2.4-11.6 Plt0.0001
Sheikh et al. BMJ 2004 329 87-88
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Location of asthma trial Total Reporting of ethnicity Reporting of ethnicity
Location of asthma trial n Yes () No ()
US 35 22 (63) 13 (37)
Europe 35 1 (3) 34 (97)
Total 70 23 (33) 47 (67)
US v Europe RR22 95CI 3.1-154.4 Plt0.0001
Sheikh et al. Thorax 2004 59 634
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No. AUTHOR SECTION OF REPORT IN WHICH ETHNICITY MENTIONED SUB-GROUP ANALYSIS BASED ON ETHNICITY
1 Barnes NC 2000 Baseline characteristics No
2 Banov CH 2001 Baseline characteristics No
3 Bleecker ER 2001 Baseline characteristics No
4 Brabson JH Baseline characteristics No
5 Busse W 2001a Baseline characteristics No
6 Busse W 2001b Baseline characteristics No
7 Calhoun W 2001a Baseline characteristics No
8 Calhoun W 2001b Baseline characteristics No
9 Fish JE 2001 Baseline characteristics No
10 Gershman NH 2000 Baseline characteristics No
11 Guendelman S 2002 Baseline characteristics No
12 Israel E 2002 Baseline characteristics No
13 Kim KT 2000 Baseline characteristics No
14 Lemanaske RF 2001 Baseline characteristics No
15 Mellon M 2000 Baseline characteristics No
16 Meltzer EO 2002 Baseline characteristics No
17 Migrom H 2001 Baseline characteristics No
18 Nathan RA 2001 Baseline characteristics No
19 Nelson HS 2001 Baseline characteristics No
20 Shapiro G 2000 Baseline characteristics No
21 Shapiro G 2001 Baseline characteristics No
22 Shapiro GS 2002 Baseline characteristics No
23 ZuWallack R 2000 Baseline characteristics No
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Ranganathan and Bhopal. PLoS Med 2006 3 e44
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The science of eugenics

• "Now that we know the laws of heredity, it is
  possible to a large extent to prevent unhealthy
  and severely handicapped beings from coming into
  the world.
• I have studied with interest the laws of several
  American states concerning prevention of
  reproduction by people whose progeny would, in
  all probability, be of no value.
• Adolf Hitler

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We must never forget the criminal Tuskegee
syphilis experiment
Yes, they lynched black women back then just as
the AIDS establishment now wishes to lynch young
black mothers with the deadly drug AZT.
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Wendler et al. PLoS Med. 2006 3 e19
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Jolly et al. BMC Med Res Methodol. 2005 5 18.
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Jolly et al. BMC Med Res Methodol. 2005 5 18.
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Marquez et al. J Bone Miner Res 2003 18 3-8
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Issues raised by researchers preliminary findings

• Language barriers
• Costs
• Lack of knowledge about ethnic minorities
• Difficulties in engaging and forming
  relationships
• Problems with obtaining meaningful consent
• Considerable hassle, for no real scientific
  benefit

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Hussain-Gambles. Fam Pract 2004 21 636-42
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Short-term

• Carefully choose areas to be studied so
  additional resources needed to recruit are likely
  to be seen as justifiable
• Recognise that there are pockets of excellence
  throughout the UK with a proven track record of
  recruiting
• Seek advice from teams who have experience in
  studying the populations of interest
• Involvement of community leaders throughout all
  stages of the project
• Same ethnicity research officers if possible
• Personalsied and face-to-face mechanisms for
  recruitment
• Sensitivity to linguistic, gender, religious and
  other cultural considerations
• Recognising that the economic burden of
  involvement with research falls
  disproportionately on the poor
• Appeal to the altruistic nature of the community
• When planning a study, agree and make explicit
  issues to do with nomenclature and coding,
  analysing and reporting of ethnicity data

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Longer-term

• Need for greater clarity on the
  contexts/populations/subjects in which
  representative, boosted and ethnic specific
  recruitment is important
• Recognise that recruitment is only one-third of
  the battle. We also need to make progress on
• analysis and
• reporting considerations
• Develop, pilot and trial interventions that
  facilitate the wider research community to
  recruit these hard to reach populations and
  efficiently analyse and effectively report
  ethnicity data

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Summary

• The main barrier to recruitment lies with the
  academic community
• There are pockets of expertise in recruiting
  minority ethnic people
• Researchers in general are however
• Concerned about their understanding of these
  communities and their skills and competence in
  effectively interacting with them
• Concerned about costs
• Worried about the additional hassle of dealing
  with difficult groups
• Not convinced of the importance of the issue
• In the short-term, researchers should seek advice
  of teams with expertise in the populations of
  interest
• In the longer-term, there is need for
  methodological work to
• Identify and agree the areas/contexts in which
  ethnicity really matters
• Consider the relevant arguments for and against
  representative, boosted and ethnic-specific
  sampling
• Develop and achieve consensus on standards for
  data collection, analysis and reporting
• Develop, pilot and trial interventions for
  facilitating recruitment of minority ethnic people

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Acknowledgements

• Raj Bhopal
• Chris Griffiths
• Laila Halani
• Joe Kai
• Toby Lasseron
• Mark Levy
• Gopal Netuveli
• Martyn Partridge
• Sukhmeet Singh Panesar
• Asthma UK