IDEA-R Workshop March 12th, 2011 NHS Evidence Specialist Collection in Ethnicity & Health www.library.nhs.uk/ethnicity Clinical Leads Prof Mark Johnson & Prof Ala Szczepura IDEA-R Workshop March 12th, 2011

A search using the term ‘trial’ identifies several items of relevance to the workshop in the SCEH collection: Hussain-Gambles M et al. Involving south Asian patients in clinical trials HTA Report Oct 2004. Summary This 128 page report investigated how South Asian patients conceptualise the notion of clinical trials and identified key processes that impact on trial participation and the extent to which communication difficulties, perceptions of risk and attitudes to authority influence these decisions.

Bartlett et al. The causes and effects of socio-demographic exclusions from clinical trials HTA Report Oct 2005. Summary This study investigates the exclusion of women, older people and minority ethnic groups from clinical trials. The study focuses on two drug exemplars, statins and non-steroid anti-inflamatory drugs (NSAIDs). Literature was reviewed on the exclusion of women, older people and minorities in healthcare research including: clinical trials, cohorts, hospital episode statistics and drug trials.

Hussain-Gambles M, Atkin K, Leese B. South Asian participation in clinical trials: the views of lay people and health professionals. Health Policy. 2006 Jul;77(2):149-65. Epub 2005 Oct 10. Abstract There is little UK-based empirical research on South Asian participation in clinical trials. It was found that lay South Asian attitudes towards clinical trial participation focused on similarities rather than differences with the general UK population, suggesting that the relevance of ethnicity should be kept in perspective. There was no evidence of antipathy amongst South Asians to the concept of clinical trials, and awareness was a correlate of social class, education and younger age. Lay factors that might affect South Asian participation in clinical trials included: age; language, social class; feeling of not belonging/mistrust; culture and religion. Approachable patients (of the same gender, social class and fluent in English) tended to be 'cherry picked' to clinical trials. This practice was justified because of a lack of time, resources and inadequate support. South Asian patients might be systematically excluded from trials due to the increased cost and time associated with their inclusion, particularly in relation to the language barrier. and attitudes to authority influence these decisions.

Hussain-Gambles M. South Asian patients’ views and experiences of clinical trial participation. Family Practice 2004; 21: 636–642. (copy attached) Su Mason, Mahvash Hussain-Gambles, Brenda Leese, Karl Atkin, Julia Brown Representation of South Asian people in randomised clinical trials: analysis of trials' data BMJ. 2003 June 7; 326(7401): 1244–1245.