What is a clinical trial?

Alice's story - 30 years a trial participant

Graphic and web designer Alice is somewhat of a clinical trial expert - his experience as a participant spans 30 years. During this time, Alice has used big cash injections from trials to supplement his DJing career and has used his time on trial wards to work on various projects - from learning web design to helping design outfits for the Spice Girls.

"I've taken part in between 40 and 50 clinical trials. Since I was around 20 years old until five years ago, I was joining clinical trials at least twice a year - and three is the maximum you can do annually.

"Money was the motivation! As it is for a lot of people. There are other reasons for joining a clinical trial - it can also be very interesting to glimpse what treatments researchers are developing - but for me, mainly it was good, easy money. Trials also give you time to do things that you otherwise couldn't. I took my computer into one trial and said to myself, in six weeks' time I will know how to build a website, and that's what I did."

Alice says

"I've been involved in so many different trials, including treatments for HIV before PrEP was developed and a trial to extract the painkilling qualities from cannabis, but most drug names are long and hard to remember.

"The most memorable ones involved more intrusive administrations of treatment. For example, in one trial I took a medicine as a pill, injection, and through a tube that was inserted through the nose into the stomach. For treatments like the latter, extra money is usually offered. I've also had some side effects - but nothing that lasted more than a few days, and it meant getting discharged early while getting paid for the full trial."

Alice says

"It could be a great experience and I usually enjoyed the isolation of it. The ward beds had curtains to pull around if ever you wanted more privacy. You would hope you're going to have a bed next to someone friendly - and making friends with the nurses was also common. In most clinical trials, you could even have visitors.

"You generally couldn't exercise, as this tends to affect trial results. Some people like me sat on their beds for the majority, but there were also game rooms with things like video games, pool, and snooker.

"Even before laptops, I'd bring in my desktop, monitor, scanner, VCR, portable TV, PlayStation...people would joke about how much stuff I brought with me, but they would all eventually be sharing it for the fun. Because I was so prepared, I loved it."

Alice says

"The shortest I've participated in was one day, and the longest were in six-week solid blocks. I prefer the latter because I enjoy the time they give you for learning and other tasks - and they also pay well."

Alice says

"I have a very positive outlook on clinical trials. When people find out I take part, some reactions can be negative, because they have this idea that you're essentially a guinea pig - or they imagine Frankenstein's lab! But it's not the case that they can do anything with you they wish, and in my experience, I find it to be highly regulated."

To reduce his risk of injury, Alice had his own criteria for which clinical trials he'd be happy to join.

"For example, I've always asked the researchers how many people a drug has been tested on before. There are many rounds of clinical trials, so if you prefer to not be one of the very first people trialling treatment, you can find one where it has already safely passed previous phases involving people. Although, if you are among the first tested, the dose is usually very small."

He adds that, while there are health considerations, there are also health positives.

"You get amazing health screenings which give you a very informed picture of your health - and you can act on the information you find. From blood tests, I found out that I had a low platelet count - a condition called thrombocytopenia which can increase your risk of problems such as bruising and excessive bleeding."