Sabiha – Interview 19
Sabiha took part in a trial of breast screening for younger women (under 50). More recently she volunteered for a trial of cholesterol-lowering drugs but was not eligible because her cholesterol level was too low.
Sabiha has taken part in several research projects, and is always keen to take part in anything which she thinks may benefit other people as well as herself.
Some years ago she was invited to take part in a trial of breast screening for women aged 40-50, having been selected at random from her GP’s list. Normally women are not invited to attend for breast screening until they reach 50, so this was a trial to assess the value of screening women earlier. She went for a mammogram every year. Sabiha was keen to take part because she thought it would be better to detect any breast cancer as early as possible. She believes if she had had any problems she would been recalled, but it would have been nice to be sent a letter at the end of the trial thanking her for her participation, telling her the outcome of the trial and reassuring her that there was nothing wrong. She feels that providing feedback is the least that could be done to recognise people giving up their own time to help research projects.
More recently, Sabiha saw a request in a newspaper for volunteers for a trial comparing a placebo with a cholesterol-lowering medication. As a diabetic, cholesterol is an issue for her, and so she volunteered. She was not worried about being randomised and perhaps getting the placebo. However, when she was screened, her blood cholesterol levels were found to be too low to be eligible for the trial so she was not able to take part. Although this was good news from the point of view of her own health, she was disappointed not to be able to contribute to the research.
She has been thinking about taking part in a trial for healthy volunteers for which she;d get paid, although she has been put off to some extent by the bad side effects experienced by people taking part in a trial at Northwick Park. When Sabiha has volunteered for research in the past she has had to take unpaid leave to attend appointments. Even though she has been willing to do this she thinks that more people would come forward for trials if they were paid something for their contribution. She also feels that being given lots of written information can be off-putting and that shorter summaries of the information with key points highlighted would be helpful.
Sabiha would like to see more done to raise awareness of clinical trials as something for the public benefit. She would also welcome research into other areas such as complementary therapies and counselling.