Iqbal, Gulnaz (2013) Improving ethnicity data collection and ethnic minority participation in randomised clinical trials. PhD thesis, University of Warwick.

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Abstract

UK ethnic minority patients are reported to be under-represented in clinical trials.
Under-representation of any patient group within an Randomised Clinical Trial can
bias trial results and subsequent extrapolation into the general population.
However, the true extent of ethnic minority representation in RCTs is masked by
the poor quality of ethnicity data. This thesis investigates ethnicity data collection in
healthcare and the representation of ethnic minority patients in RCTs in the UK.
A systematic literature review of ethnicity data collection identified a paucity of
published evidence. Self-reported ethnicity was recognised as the optimal method
of data collection but training is needed to raise awareness of the importance of
such data. Reasons for the gaps in ethnicity data were explored through a
healthcare professional survey and focus groups with lay South Asian volunteers.
The majority of healthcare professionals agreed it was important to collect ethnicity
and emphasised the need for training. The focus groups revealed a willingness to
provide these data, subject to being given information regarding their use.
A second systematic literature review of interventions to improve recruitment and
retention of ethnic minorities to RCTs found a dearth of literature from the UK. US
studies reported financial incentives, government grants and the involvement of
community representatives to be effective.
Census data, hospital episode statistics data, clinical trials recruitment and reasons
for non-participation, collected in one cancer research network, were used to
assess the local representation of ethnic minorities within RCTs. The results did not
show ethnic minorities to be under-represented, but there was insufficient
evidence to rule out under-representation as a problem.
Reducing inequalities in participation in clinical trials is dependent upon having
accurate and complete ethnicity data. A change in policy to mandate the collection
of ethnicity data in primary care and linked through to other healthcare service
providers is required.

Item Type:	Thesis (PhD)
Subjects:	R Medicine > RA Public aspects of medicine
Library of Congress Subject Headings (LCSH):	Minorities -- Medical care -- Statistics, South Asians -- Medical care -- Great Britain, Medical statistics, Clinical trials
Official Date:	November 2013
Institution:	University of Warwick
Theses Department:	Warwick Medical School
Thesis Type:	PhD
Publication Status:	Unpublished
Supervisor(s)/Advisor:	Dunn, Janet; Thorogood, Margaret
Sponsors:	Cancer Research UK
Extent:	1 volume (various pagings) : charts.
Language:	eng

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