‘I Just Don’t Want to be a Human Guinea Pig’ – Why Taking Part in Trials Isn’t What You Think

When I tell people that I’m doing a PhD in clinical trials methodology I’m usuallly greeted with one of two responses, ‘Oh right, so you’re still a student?’ or ‘Oh my god, trials? To test drugs and stuff?’. The ‘test drugs and stuff’ response isn’t usually framed in a positive light either; eventually these conversations result in mumbles of ‘human guinea pig’. So, as today is International Clinical Trials Day, I thought I’d take some time to write about why taking part in trials does not make you a human guinea pig.

Public perception of research, and a few figures

  • Estimates of the percentage of people who say they think it’s important for the NHS to participate in research vary, but are largely very high – a 2012 poll (OnePoll) gave a figure of 87% and a similar poll conducted by Ipsos MORI gave a figure of 97%
  • Only 7% of people said they’d never take part in research

So why am I having so many encounters with people using the words ‘human guinea pig’ when these positive results suggest the public are in support of research?

I think it’s the perceived risk of taking part in a trial. The word ‘trial’ doesn’t exactly reassure you that you’re signing up for something that’s unlikely to harm you – it raises questions, reinforces uncertainty, and screams ‘risk’.

This is somewhat true; we do trials because we don’t know the answer – which treatment is ‘better’, which is most cost effective, which will improve quality of life rather than simply length of life, should we avoid surgery and just go for medical management, is the short-term stint in hospital required for surgery better than a long-term physiotherapy plan? These are questions that staff working in our NHS have to ask themselves each day, whenever they see a patient. If there is no evidence for them to base their decisions on, then we really should be working to answer that question in an ethical and efficient way.

Without evidence, people are exposed to harm, and the NHS is not providing the best possible care to the public. Without trials, the world of health and social care would never, ever progress.

Clinical trials aren’t always about testing new drugs

The trials unit at Aberdeen University, CHaRT (Centre for Healthcare Randomised Trials), specialises in pragmatic trials of discrete non-drug technologies or complex interventions. What does that mean? In short, usually not drugs, and hardly ever new drugs. Non-drug technologies are just that, it could be a type of scan, a device, a diagnostic tool – the list goes on. Complex interventions are a bit trickier; the Medical Research Council defines these as interventions with several interacting components. Again the variety in this category is huge; it could be an abdominal massage like in Glasgow Caledonian’s AMBER trial, cognitive behavourial therapy, interventions aimed at groups or communities of people – basically complex interventions are just that; complex. They’re more difficult to evaluate but very useful nevertheless.

So, if you take part in a clinical trial you will not necessarily be taking a new drug. There are lots of trials, particularly publicly-funded trials, that aim to find out which of two existing interventions is most useful. By existing interventions, I mean things that are already being used in standard care, we just aren’t sure which one works best. An example would be CHaRT’s C-GALL trial, which aims to find the most effective treatment for gallstones; is it better to remove the gallbladder altogether or to go down the route of medical management – both of these approaches are used in the NHS today, and we genuinely don’t know which is the best.

What have trials done for us?

Trials are absolutely central to our healthcare system, they impact each of us all the time – without us even realising.

On a personal note, someone close to me took part in a clinical trial a few years ago. The intervention proved to be successful and they’re still regularly receiving that treatment for free because they took part in the trial for it. That’s life-changing not only for the person taking part in the trial, but their family and friends too.

Taking a step back, Cassandra Jardine was a journal for the Telegraph, she died in 2012 from lung cancer – after her diagnosis she wrote extensively about her illness, winning the Lung Cancer Journalism Award in 2011. She took part in a trial of a lung cancer vaccine that aimed to extend her life; she knew her illness would kill her, but she wanted to do something good to contribute to the advancement of medicine, and to see if she could hang on for an additional few months. I’d really recommend you read her piece here.

Eventually she came to the conclusion that she was in the placebo group (something she covers in her article as an ‘extremely rare’ trial), but despite that, she did benefit from that trial. She said:

‘Most persuasive of all is the evidence that patients on clinical trials do better than the norm because they are monitored more closely. Instead of quarterly X-rays, I have CT scans and monthly blood tests.’

Whether trials provide a direct benefit to you or a loved one, you’ll still be benefiting indirectly.

Trials have influenced clinical practice. Beta blockers and aspirin following acute myocardial infarction, calcium antagonists following non-Q-wave myocardial infarction, aspirin and heparin following unstable angina, hypertension control and lipid lowering to reduce coronary heart disease mortality… the list goes on.

Our National Health Service is admired by people around the world, and rightly so – we build in the need to evaluate interventions, we allocate public money to funding these trials, and then we change practice to ensure more people have the chance of benefiting, or less people are exposed to harm. If you are ever approached about taking part in a clinical trial, I urge you to give that researcher a chance. Let them talk you through the trial, weigh up the potential risks and benefits, and make an informed decision based on your own circumstances and feelings.

Take a look at #ICTD2017 and #WhyWeDoResearch to find out more about trials, taking part in research, and why research is so important.

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