Involving South Asian patients in clinical trials
Hussain-Gambles M, Leese B, Atkin K, Brown J, Mason S, Tovey P
Record ID 32004000815
English
Authors' objectives:
Many randomised controlled trials have fewer South Asian participants than expected. There is a lack of ethnic minority recruitment data in many trials, making assessment problematic. This study was prompted by a lack of knowledge about how South Asian people perceive trial involvement and the risks and benefits involved.
This study aims to carry out the following:
- Investigation of how South Asian patients conceptualise the notion of clinical trials.
- Identification of the key processes that impact on trial participation and the extent to which communication difficulties, perceptions of risk and attitudes to authority influence these decisions.
- Identification of whether South Asian patients are homogeneous in these issues, and which factors differ between different South Asian subgroups.
- Identification of how professionals regard the involvement of South Asian patients and their views on strategies to increase participation.
Authors' results and conclusions:
There are a number of reasons, identified from this study, why South Asians should not be excluded from clinical trials. Exclusion is inequitable since evidence suggests that people who take part in trials have better clinical outcomes. Unless South Asian people are routinely included in trials, the diseases to which they are disproportionately disposed (including diabetes and heart disease) will remain poorly understood and treated. Furthermore, exclusion of minority ethnic groups from trials undermines the governments NHS plan for tackling inequalities. It is also important to sustain the widespread applicability of trial findings to the whole population. Exclusion of a subset of the population could have implications regarding the safety and efficacy of new drugs. Finally, participation of minority ethnic groups in trials would help to reduce alienation and mistrust and emphasise that they are an integral part of British society.
Authors' recommendations:
The following suggestions may provide effective strategies for South Asian recruitment to clinical trials:
- use multi-recruitment strategies - define the demographic and social profiles of the population to be included - use focus groups to identify any potential barriers - consult representative community members to provide assistance in the study - ensure eligibility criteria are set as wide as possible to achieve wider applicability of results - develop educational and recruitment approaches to attract ethnic minority health professionals - ensure health professionals are adequately trained in culturally and ethnically orientated service provision - determine the most effective mass media to use in study promotion and recruitment - target inner-city, single-handed practices likely to have high ethnic minority populations.
Authors' methods:
Review, Survey
Details
Project Status:
Completed
Year Published:
2004
English language abstract:
An English language summary is available
Publication Type:
Not Assigned
Country:
England, United Kingdom
MeSH Terms
- Attitude of Health Personnel
- Communication Barriers
- Emigration and Immigration
- Focus Groups
- Motivation
- Needs Assessment
- Patient Selection
- Prejudice
- Qualitative Research
- Socioeconomic Factors
- Surveys and Questionnaires
- Trust
- Bangladesh
- Clinical Competence
- Clinical Trials as Topic
- India
- Minority Groups
- Pakistan
- Patient Acceptance of Health Care
- Research Design
Contact
Organisation Name:
NIHR Health Technology Assessment programme
Contact Address:
NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK
Contact Name:
journals.library@nihr.ac.uk
Contact Email:
journals.library@nihr.ac.uk
Copyright:
2009 Queen's Printer and Controller of HMSO