Report A
Report A – Survey of perceptions of clinical trials by ethnic and non-ethnic minority patients Introduction
There has been much debate about the level of participation by ethnic minorities in clinical trials.
It is important that ethnic minorities are adequately represented in clinical trials, as otherwise the result may not provide a true picture of the effectiveness and safety of the drug across the whole population.
This report will describe a survey undertaken to examine the differences in perception of clinical trials between individuals from ethnic minorities and those from non-ethnic minorities. Recommendations will be made on how recruitment of volunteers among ethnic minorities can be improved.
Method
A written questionnaire was designed to measure how ethnic minorities perceived the safety and likely societal benefits from clinical trials compared with their non-ethnic counterparts. Six hundred questionnaires were sent to a random sample of patients selected from each of the two subject groups. Two hundred and fifty were returned. In addition, twenty-five patients from ethnic minorities were interviewed in GP surgeries. Over 65% of the sample were women.
Findings
Firstly, a minority (30%) of ethnic respondents stated that they were unlikely to agree to take part in a clinical trial if asked. In addition, the majority (60%) said they were likely to agree and a small proportion (10%) had no opinion. The results from the non-ethnic sample were similar. Finally, a significant majority (70%) indicated that they were likely to participate, while a minority (30%) of non-ethnic respondents felt it was unlikely they would want to be involved.
The survey also showed that in relation to understanding the need for clinical trials, the results were broadly similar. Firstly, an overwhelming majority of ethnic minority respondents (80%) felt that clinical trials were necessary for the development of new drugs. This compared with (70%) of non-ethnic respondents. Secondly, a significant minority (20%) of both ethnic and non-ethnic respondents felt that clinical trials were not necessary. Finally, a very small minority (10%) of non-ethnic respondents had no opinion.
Ethnicity was mixed, with a larger proportion of patients of Asian origin (India 22% and Pakistan 31%) than patients of black origin (28%). There were also considerable differences in the level of understanding of English and literacy, as indicated by analyzing who completed the questionnaire.
Discussion
It is clear from this research that there are many similarities in the perceptions of ethnic minorities and non-ethnic minorities regarding clinical trials. However, there are also some major differences. The most significant was whether respondents believed new drugs were less likely to benefit members of ethnic minorities. 80% of ethnic minorities agreed, compared to 20% who did not. The return rate was exceptionally high, at over 40%, which can give us reasonable confidence in the validity of our results.
Conclusion
In conclusion, it is clear that while there are significant differences in perception of clinical trials between individuals from ethnic minorities and non-ethnic respondents, these do not appear to influence willingness to take part in trials. Ethnic minority patients were more aware of the need for clinical trials, but doubted that the new drugs would benefit their community equally. It is important that this perception is challenged and evidence put forward that this is not the case. A considerable number of those interviewed were unable to read English and would therefore require translators. Unless these recommendations are put into practice in the near future, ethnic minorities will continue to be underrepresented in clinical trials. However, there is a good chance that if implemented, the suggested changes will produce a favourable result.
English for Medicine – Copyright © 2010 Garnet Publishing Ltd 259
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