I originally wrote this post for the What Culture website when they were first launching the Science section of the website, but I wanted to post it here so that I have it on my own blog too.
Clinical trial participation – probably the easiest way of changing the world.
Clinical trials are a critical part of scientific research; they allow us to make sure new products and devices to manage, prevent, treat or detect disease are beneficial and safe for human use.
Thousands of clinical trials are completed every year spanning hundreds of countries around the world. The results of these trials allow governments to make decisions on health budgets, and doctors to make decisions on which drug or device is best for their patients. Patients can also use the results of clinical trials to make choices about their own healthcare plan. Trials may test drugs or combinations of drugs, surgical procedures or devices, ways to screen patients for diagnosis, and care procedures. Each and every clinical trial requires human participants to take part in the study in order to test these new medicines and procedures, but it’s very difficult to find people to sign up. Trials can be abandoned if enough people don’t sign up to participate, and if that happens then answers to the research question the trial aimed to answer will remain a mystery.
Trials are hugely important to human health and disease; without them we would be unable to move science forward, and ultimately we would be unable to save lives. Why should you be the one to sign up for a trial though, is there any way you can benefit from taking part in a clinical trial? Read on to find out my top 8 reasons to say ‘yes’ to trial participation!
1. It’s a brilliant excuse
Have you had a really busy week at work? Don’t fancy that big night out you’ve got planned and need a decent excuse so your pals will get off your back? They can’t exactly try and twist your arm if you declare you must remain sofa-bound because science said so.
Try, “I’m taking part in a potentially world-changing clinical trial and I must refrain from intense movement (e.g. throwing your usual wild shapes on the dancefloor) and drinking alcohol in excess (e.g. the inevitable 3am jagers you’re known for).”
Other excellent uses for taking part in a trial as an excuse include:
- Getting out of jobs your partner’s been nagging you about for months (No it’s definitely not ok for you to be doing DIY or unblocking the drains or really anything – much too strenuous)
- Doing extra stuff outside of work (You can’t possibly stay late, you have a clinic visit to attend)
- Jury duty (You’re trying to cure cancer and they want you to sit and listen to a minor theft case for 4 days? Nae chance)
2. You can make money!
Each clinical trial is different, and your level of involvement will depend on the type of study, what disease the researcher is working on, and the type of intervention you receive – for example, surgical procedures will take longer than giving you a new type of pill to swallow.
Some trials require very little input from you; you may need to keep a food diary or pop in to see a nurse once every few months. For trials like this where you’re not inconvenienced too much you might get a little treat, a notebook or a few pounds to get yourself a coffee on the way out of the hospital.
For other trials though participants are required to be much more involved; these more intense types of trial can require you to stay in hospital for a few days at a time, attend multiple clinic visits or change the way you live day-to-day. These types of study often pay you a higher sum of money as researchers realise you may need to take time off from work or university. These high paying trials are very popular with unemployed people and students looking to make some extra money.
I will say however, taking part in a trial should not be a decision you take lightly – money is a benefit, not a motivator!
3. You’ll help researchers sleep at night
Trials may test drugs or combinations of drugs, surgical procedures or devices, ways to screen patients for diagnosis, and care procedures. Each and every clinical trial requires human participants to take part in the study in order to test these new medicines and procedures, but it’s very difficult to find people to sign up.
In practical terms, not recruiting enough participants is a Very Bad thing for science. In the very worst cases trials can be abandoned if enough people don’t sign up to participate, and if that happens then answers to the research question the trial aimed to answer will remain a mystery.
Thankfully trial abandonment is rare. In more common cases though, researchers manage to recruit between 60 and 80% of the people they’d hoped to – you’re thinking that’s not so bad, right? It’s not good, that’s for sure; without the target number of participants, the results of a study could actually give us incorrect information. Designing and managing a clinical trial is hard work; there are multiple areas where the study could miss targets and exceed budgets. Recruitment is the most common pitfall; getting you guys involved in their trials is the one thing that keeps researchers awake at night.
Take part in a clinical trial and reduce stress levels of a researcher immeasurably – their families will thank you for it.
4. To find out about your own health
If you’re one of those lucky people who is rarely ill, finding out stuff about your own health can super interesting.
Maybe you’re interested to know what your blood type is; a trial that involves taking a blood sample from participants (a super common thing for trials to ask from their participants) will tell you that, and help advance research at the same time.
Other research can give you more detailed information about your own health. For example trials focussing on genetics often ask to carry out a genetic screen on their participants; this is usually a simple process either using a blood sample or a cheek swab. You could find out if you’re at a high risk of obesity, which could help you turn down that slice of cheesecake you had your eye on for after dinner.
In other cases, trials like this may require more thought before taking part; you could find out you’re more at risk of cancer or neurodegenerative diseases like Alzheimer’s, all from giving a blood sample to a research study. It’s important to note here that genetic trials often offer counselling as well, finding out you are at risk of a certain disease can come as a shock – but it does allow you to implement lifestyle changes and hopefully reduce your risk over time.
5. To improve our NHS
We have all seen shocking headlines about how stretched the NHS budget is, and how likely it is to be stretched further as the UK population ages. Clinical research gives us the opportunity to make the medicines that are paid for by the NHS, and the healthcare procedures we use, more efficient. If we can learn how to make the NHS more efficient, the budget will go much further; magic!
For example, there are lots of different treatments available for diabetes – a growing problem in our society. Which one of these treatments works best though? Trials can answer that question for us. This doesn’t mean we’d stop giving out every other treatment though; each patient is different and certain drugs may work better for some people than others.
What we’d be able to do as a result of a trial like this, is find out which types of people are more likely to benefit from each treatment. Then we would be able to match people up with treatments that are more likely to work more quickly. By preventing the use of trial and error, patients would benefit as their disease would be under control more quickly, and we’d be cutting out waste to free up funds for areas of the health service – everyone’s a winner.
6. To help others
For those of us who are lucky enough to be in good health, we tend to take it for granted until the day we wake up sick. We then promise ourselves we’ll actively appreciate being well again. If you’re lucky enough to never wake up sick, there’s no doubt that you’ll experience someone close to you being given difficult news about their health. I can assure you that this will bring you swiftly back down to Earth.
As a healthy volunteer, clinical trials can give you the opportunity to help others. Healthy volunteers are often the group of people researchers find most difficult to bring in to their trials, mostly because when we’re healthy the problem of poor health seems like a distant problem that we’ll deal with if and when it happens to us. New drugs are tested in healthy people before people suffering from the target disease, this allows researchers to double check that the drug is safe. Without healthy volunteers trials would not be able to run.
So when someone close to you is unfortunate enough to receive an unwelcome diagnosis, don’t spend your time being angry at the world and frustrated because life just doesn’t seem fair; think about signing up to take part in a trial.
7. To take control of your own health
When people are given the news that they have a potentially life threatening disease they go through a mixture of emotions. In some cases they may feel helpless, they may ask ‘why me?’ and be frustrated over their perceived lack of control. Taking part in a clinical trial offers one option of regaining that control.
Being a trial participant does not guarantee that you’re going to be given a new or experimental treatment though – patients are randomly assigned to groups in a trial, so you may end up in the placebo group. A trial can still benefit you as you will be more closely monitored than you would throughout standard care.
Signing up for a clinical trial is not a decision that should be taken lightly; it’s a big decision to make and something that isn’t right for everyone. For others though, they can feel empowered by being a participant in a trial. 1 in 6 cancer patients takes part in a clinical trial in the UK each year, a figure that’s raised from 1 in 26 a decade ago. When asked why they decided to take part in a trial, the majority responded that they wanted to feel in control of their own healthcare, and a trial gave them that opportunity.
8. To advance science
Science is an industry full of unanswered questions, many of which can be answered by completing a clinical trial.
An example of a clinical trial may involve randomly assigning people to 2 groups; giving one group of people a drug you think might prevent heart disease each day, and giving the other group of people a placebo (in this case something that looks like a the drug but which has no effect). The result of the trial will give you information on whether that drug prevents heart disease or not. Other trials may not use placebos at all; in this example one group of people could be given the test drug, and the other group a drug which we already know prevents heart disease. Trials with this sort of design can prevent waste and help science and medical treatments advance – if the test drug prevented heart disease more effectively we could start using that instead of the one already in use.
Isn’t that cool? You could help to answer a huge and important scientific question, and you don’t even have to work in a lab.