Table 3 Enablers and barriers of participation of ethnic minorities in clinical research
South Asian (total N = 242) | African (total N = 56) | |||
|---|---|---|---|---|
n | % | n | % | |
Enablers | ||||
Being provided with supporting information on managing my health condition in general. | 81 | 33.6% | 25 | 43.9% |
Conducting certain aspects of your clinical research visits/appointments at a more convenient location (i.e. places you frequently visit—local religious places of worship). | 64 | 26.6% | 20 | 35.1% |
My family member can come along with me to the visit to help me in the decision-making process. | 47 | 19.5% | 10 | 17.5% |
Monetary incentive. | 44 | 18.3% | 10 | 17.5% |
I will be able to help save or improve the lives of patients with a similar condition. | 40 | 16.6% | 21 | 36.8% |
Other reasons. | 35 | 14.5% | 8 | 14.0% |
If I would have access to the study drug after my participation ended. | 32 | 13.3% | 10 | 17.5% |
Clinical trial mobile application (to remind me of appointments, patient information sheets, my current progress in the clinical trial, etc.). | 45 | 18.7% | 7 | 12.3% |
I will be seeing a specialist of my medical condition as part of my clinical trial visits. | 37 | 15.4% | 6 | 10.5% |
Reduce the need to see my GP. | 36 | 14.9% | 15 | 26.3% |
It will help advance the science and the treatment of my disease or condition. | 30 | 12.5% | 6 | 10.5% |
Prefer not to answer. | 16 | 6.7% | 0 | 0.0% |
Barriers | ||||
I am concerned about how my personal information will be used and who will have access. | 54 | 22.4% | 18 | 31.6% |
I am worried that I am being used for research without any benefit for me. | 19 | 7.9% | 6 | 10.5% |
I do not trust people who carry out research. | 8 | 3.3% | 1 | 1.8% |
I find it difficult to speak to doctors and nurses. | 16 | 6.6% | 4 | 7.0% |
I have not heard anyone in my community taking part in the trial, so it must not be relevant to me. | 35 | 14.5% | 9 | 15.8% |
The side effects may be worse than my current treatment. | 53 | 22.0% | 16 | 28.1% |
If I take part in a trial, my disease may get worse. | 29 | 12.1% | 6 | 10.5% |
I will be exposed to a lot of unnecessary investigations that may have no benefit. | 26 | 10.8% | 8 | 14.0% |
Religious views. | 8 | 3.3% | 1 | 1.8% |
Other reasons. | 21 | 9.1% | 0 | 0.0% |
Prefer not to answer. | 55 | 24.3% | 6 | 10.5% |