Debunking 9 common clinical trial myths

You may have noticed that there have been a lot more conversations about clinical trials recently, especially in relation to the COVID-19 vaccines and treatments. As a result, there are many blogs, forums and social media posts talking about clinical trials, but did you know that any medication you’ve previously taken – from cough drops to antibiotics – has been through a clinical trial? It’s brilliant that people are talking about the subject more often, however, it can be tricky to know what information is reliable.

To help you tell fact from fiction, we’re debunking nine common myths…

Myth #1: Being in a clinical trial will not help you

If you participate in a clinical trial, you may have the opportunity to receive an investigational treatment that is not available to people outside the trial, and that investigational treatment might be more effective than others your clinician can currently prescribe. What’s more, the clinical trial team, which includes scientists, nurses, and doctors, will monitor your health very closely. You may even receive more tests and check-ups than you usually would.

Although volunteering in a clinical trial isn’t without some risk, studies suggest that patients who participate in trials do not have worse outcomes than those who do. So, whether you’re a newly diagnosed patient or someone who has tried all available treatment options, if you’re interested in participating in a clinical trial, speak to your doctor.

Myth #2: Clinical trials are dangerous

Safety is a high priority for everyone involved in clinical trials. There can be a very small risk of experiencing severe side effects when you take any medication, and that is also true in clinical trials, particularly where you receive an investigational treatment. But it’s important to remember that investigational treatments must go through rigorous testing before they can be given to clinical trial participants. Unless scientists and clinicians are confident that the investigational treatment is likely to be effective and safe, they will not give it to you.

Also, all clinical trials are reviewed by regulatory bodies, like the U.S. Food and Drug Administration (FDA) or European Medicines Agency (EMA), before they start. This is to make sure the investigational treatment meets their high standards before it is given to participants, and that there are appropriate processes and protocols in place that protect your safety and rights. During a clinical trial, researchers and clinicians also rigorously assess and monitor participants’ safety.

Myth #3: Every clinical trial uses a placebo

Before we dive into this one, let’s recap what a placebo is. A placebo is a product that looks exactly like the investigational treatment but does not cause any effects, in other words, it won’t impact your health. You may have heard of it as a “sugar pill” before.

The truth is that some trials do use placebos, but others don’t. A clinical trial may compare an investigational treatment, to an existing one, a placebo, or nothing at all. It ultimately depends on how serious the condition is and whether there is an existing treatment available. If you’re someone who has a life-threatening condition such as cancer, you will either receive the investigational treatment or the current one available – you will not receive a placebo. This is so researchers and clinicians can understand the potential impact of an investigational therapy, without withholding treatment.

Myth #4: Your clinician will tell you if there is a trial that is relevant for you

Not necessarily. Your clinician may be able to direct you to relevant trials, but they might not be aware of all the clinical trial options available to you. Thousands of clinical trials occur each year so it’s hard for your clinician to keep up to date with the latest trial information. If you’re interested in participating in a clinical trial, or would like to see if there is one available for your condition, you can find a trial on clinicaltrials.gov. Patient advocacy groups may also be able to provide you with relevant information.

Before you volunteer, it’s important to learn as much about a clinical trial as possible, and to speak to your clinician about how participating in a clinical trial could impact your health outcomes.

Myth #5: Once you sign up to a clinical trial, you can’t drop out

This is simply not true. If you join a clinical trial, you can leave at any stage, even if you have signed a consent form and received any form of investigational treatment or therapy. If you do decide to leave a trial you are participating in, be sure to speak to your trial research team (clinician, trial nurse and doctor), as some medicines need to be stopped slowly, with a doctor’s help.

Myth #6: You must live near a major hospital to participate in a clinical trial

Today, there are many options for taking part in a clinical trial. The location of the clinical trial depends on what the trial is testing, and the treatment being investigated. Clinical trials are held at hospitals, universities, doctor’s offices, community clinics and remotely where instead of attending physical clinics, you may speak to your trial doctor or nurse regularly via video call instead.

Even if the investigational treatment does have to be administered at a hospital or specialist center, you may still be able to participate as support may be provided for travel and accommodation costs.

Myth #7: Being in a clinical trial is expensive

Some clinical trials may reimburse you for things like travel and accommodation costs. And if you have medical insurance, your insurance will likely cover the costs for things like routine doctor visits with your regular clinician that would be done even if you weren’t participating in the trial. To understand how your expenses could be covered, speak to the clinical trial research team and your health insurance provider about the coverage they provide for trial participants.

Myth #8: You have to give up a lot of time to participate in a clinical trial

How much time you need to dedicate to participating in a clinical trial really depends. Every trial is different. Some clinical trials require frequent hospital or doctor visits, whereas others rely on remote check-ins, where you submit information about how you’re feeling via an app and speak to your trial doctor or nurse via the phone. Meanwhile, other clinical trials are more in line with the routine check-ups you’d usually have with your clinician. No matter how the clinical trial is run, as a participant your health will be closely monitored.

To get a better understanding of the time commitments you’d need to make to participate in a specific trial, speak to the trial research team, who will be able to provide you with the information you need.

Myth #9: By joining a clinical trial, you lose control of your personal health information

Sharing clinical information enables clinicians, healthcare providers and patients to make informed decisions, and helps scientists more easily build on previous clinical research and develop new and effective treatments. However, protecting patient privacy comes first.

If you join a clinical trial, it’s likely that you will need to provide a lot of healthcare information, such as your age, height, weight, medical history, blood pressure, and disclose whether any one in your family has suffered from certain conditions such as epilepsy. As part of the informed consent process, you will be told what clinical information will be collected and how it is used, shared, and protected. Generally, your clinical information will be anonymized, so the research team will not see your name against your data. There are a lot of rules and regulations around how your healthcare data should be handled to ensure your privacy. If you have any concerns, speak to the clinical trial research team.

Advancing healthcare with clinical trials

Clinical trials are crucial for developing new treatments and diagnostics. Here, we’ve debunked nine of the most common myths around clinical trials.