8 Reasons You Should Take Part in a Clinical Trial

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.

What Is Blinding (Or Masking), and Why Is It So Important?

Hoorah! Blogtober day 4, and the resurrection of my Clinical Trials Q&A series.
This is a series where I answer questions about all things trials – this is the third post in this series, previous posts have looked at the first clinical trial, and why you might choose to do a trial in favour of using other study designs (this post explains the concept of randomisation, I’d recommend reading that one if you’re not sure what randomisation is – it’ll help this one make more sense).

This post looks at a concept that’s crucial to the success of trials – blinding.

What is blinding?

Blinding, also referred to as masking, refers to “the concealment of group allocation from one or more individuals involved in the research study“. In practice, that means that if you’re taking part in a trial, you will not know what treatment arm you have been allocated to. Often, your doctor or healthcare professional will not know either.

There are various different types of bias:

Table taken from the European Patients’ Academy

Why is blinding so important?

Blinding serves to avoid bias. Sources of bias can come from participants, clinical staff and/or the trial team that’s interpreting the results.

This is not a bad thing, it’s just a thing. We’re all human, and it’s human nature to be influenced by the things that we know or believe – if we don’t know them then we can’t exert our own biases. Think about it, if you have a headache and you take a pill that says it will make your head feel better, when you do feel better you are likely to attribute it to the actions of that pill. In actual fact your headache might have just lifted of its own accord, but you’re much more likely to believe it was a result of the pill.

This idea translates to clinical trials too – if you take part in a trial that’s aiming to find the best tablets to treat a headache and you are told that you have been allocated a headache-stopping pill, you’re more likely to report that your headaches have reduced since you started taking the pill. If you don’t know what the pill is (maybe it’s a sugar pill that has no medical ability at all, maybe it contains a drug that research think will cure headaches), then you are more likely to report the truth of whether your head is still hurting or not. We are swayed by the information that we have, particularly if that information has the potential to make us feel well or unwell.

Blinding is not only important for participants; clinicians, researchers and the people analysing the trial data can also be influenced by the knowledge of which group a participant has been allocated to. If the person recruiting participants into a trial, or treating people within that trial, knows which group their participants are allocated to, their behaviour may change. These changes are often subtle and completely subconscious, but they could influence the way that the participant views the treatment and therefore influence the results of the trial.

Blinding isn’t always possible

In an ideal world every study would be triple blind – participants, clinicians and researchers would all be blind to the treatment that the participant has been allocated to. The world isn’t ideal though, and lots of the trials that are going on involve complex interventions (i.e. not something as simple as a tablet that you can easily duplicate the look and feel of to ensure allocation remains concealed). Some trials are only able to run if they are single blinded, or completely unblinded- surgical trials for example. Innovative trial designs and techniques are often incorporated in an effort to overcome potential bias in these situations.

Blinding isn’t just important in clinical trials involving humans, lab research involving anything from mice to individual cells can be blinded too! I know that lots of people reading this are involved in laboratory research – if that is you, and you are not currently using blinding to avoid bias in your studies, head to the CAMARADES website.
CAMARADES (Collaborative Approach to Meta-Analysis and Review of Animal Data from Experimental Studies) aims to provide an easily accessible source of methodological support, mentoring, guidance, educational materials and practical assistance to those wishing to embark on systematic review and meta-analysis of data from in vivo studies; that includes providing help and support with things like blinding and randomisation. This resource is a brilliant starting point. If you’re not using techniques like blinding and randomisation in you’re research, you’re not alone. This article from The Scientist earlier this year (original publication here) suggests that more than 95 percent of the preclinical work cited by 109 clinical trial proposals lacked the hallmarks of best practices, such as randomization or blinding. It’s time to change this.

When Was the First Clinical Trial?

As you’ve probably (hopefully!) picked up from other posts on this blog, my research is centred around clinical trials and their methodology. Trials can be intimidating for people that don’t know a whole lot about them, and as I’ve mentioned before, the ‘guinea pig‘ concept seems to haunt trial participation.

In this series of posts I want to answer any questions people have – from the basic to the obscure and everything in between – and demystify clinical trials. I asked a few friends who don’t work in a trials environment what they don’t know about trials, and the obvious starting point was ‘when was the first clinical trial?’, so here we are. Read on to find out when and how and first clinical trial came about.

Some sources say the first clinical trial was conducted in 605-562 BC, as outlined in the Old Testament’s Book of Daniel. Put simply, King Nebuchagnezzar II ordered the children of royal blood to eat only meat and wine for 10 days. Daniel asked that he and three other children be allowed only to eat vegetables, bread and water. After the 10 days was over, Daniel and the three children were noticeably healthier than the children who had eaten only meat and wine. Whilst this is clearly research (though as Ben Goldacre points out, probably underpowered research), the groups were not controlled. This was probably one of the first times in evolution of human species that an open uncontrolled human experiment guided a decision about public health.

James Lind is credited with the first controlled clinical trial; controlled meaning that his study included a comparison, or control, group. The comparison group received a placebo, another treatment or no treatment at all. Lind, a Scottish Naval Surgeon, conducted the first controlled clinical trial on the 20th May 1747 on a group of sailors suffering from scurvy.

He included 6 pairs of sailors in his trial; placed them all on the same diet, and then gave each of the pairs an additional intervention. One pair had a quart of cider each day; one pair took 25 drops of elixir vitriol (sulphuric acid) three times a day; one pair had 2 spoonfuls of vinegar three times a day; one pair were put on what Lind describes as a ‘course of sea-water’; one pair each had 2 oranges and 1 lemon given to them each day; and another had what’s described as a ‘bigness of a nutmeg’ three times a day.

I know which of the treatments I have preferred at that time (i.e. not a course of seawater!).

At the end of day 6 of Lind’s trial, the pair that had eaten 2 oranges and 1 lemon each day were fit for duty and taking care of the other 5 pairs of sailors. Lind notes in his book ‘Treatise on Scurvy’ (published in Edinburgh in 1753) that he thought after the citrus fruits, the cider had the best effects.

We now know scurvy is caused by a deficiency in vitamin C, hence why fruits rich in vitamin C had his sailors fighting fit again after just 6 days.

Clinical trials like James Lind’s are what we base our current practice on. Over the years since Lind found the cure for scurvy, huge advances have been made in the methodology of trials; we now have placebos, use randomisation, adhere to various codes of conduct, and work with huge groups of patients and teams of research staff across the world in an effort to answer clinical questions.

This is the first post in a series I’m calling ‘Clinical Trials Q&A’. If you have any questions about clinical trials, what they are, why we do them, what their limitations are.. etc, please pop them in a comment or tweet me @heidirgardner and I’ll be sure to answer them in upcoming blog posts.