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Title: Improving ethnicity data collection and ethnic minority participation in randomised clinical trials
Author: Iqbal, Gulnaz
Awarding Body: University of Warwick
Current Institution: University of Warwick
Date of Award: 2013
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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.
Supervisor: Not available Sponsor: Cancer Research UK
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available
Keywords: RA Public aspects of medicine