If you were offered to join a clinical trial, what would be your first thought? “No way, they are too dangerous”, “I don’t trust it”, “How much will I get paid?”
Most people only consider participating in research studies as a last resort to treat a condition or illness, or the possibility of a financial incentive. We all want new drugs and cures to be developed, but not many of us are willing to volunteer in clinical trials to make it possible. We fear jeopardizing our health, and the doubts, uncertainties and lack of information surrounding clinical trials do not help to ease our minds.
Whether or not to participate in a clinical trial is a very personal choice, and it is everybody’s right to be able to make an informed decision based on facts and not fears, which is why we are here to dismantle common myths and misconceptions.
Let’s start from the beginning.
What to know about clinical research
The primary aim in medical research is to understand, prevent, diagnose, and treat diseases that affect human health. However, this has not been an easy process, and most advances have been made through trial and error.
There are many types of research with different focuses, so there is no “standard” clinical trial. Each study will have unique characteristics, timelines, and participation requirements, but they all revolve around one crucial element: participants.
Misconceptions about clinical trial participation:
Let’s go over some of the most common thoughts people have when talking about clinical trials.
Clinical trials are only for critical patients
A frequent misconception about clinical trials is that they are only for patients suffering from a disease, but that is far from reality. Although research often involves individuals who have been recently diagnosed, or who have tried other treatments with no success, this is not the norm.
Many different people can benefit from participation in clinical trials, even healthy ones. A simple example would be contraceptive studies, where volunteers with no health condition also participate. These individuals are not looking for a solution to a disease, but rather an improvement in their lifestyle. This is why when we talk about someone in a clinical trial, we usually call them Participants, not Patients.
People are paid a lot of money to participate in clinical trials
Clinical trials pay less than you might expect. In most studies, participants will only be paid a stipend for their time. It is not to be considered as an incentive, and the amount of money that a participant can be given is strictly regulated and controlled. This is done to protect vulnerable populations, such as people who are struggling financially that would be willing to join a study only for money, which would be considered a form of coercion.
There are always people in the trial that don’t get the drug
Yes, depending on how the research is designed, some patients may receive the drug being tested, while others take a placebo, but this is not always the case. In some trials, the new drug might be compared to the standard treatment for a particular condition or disease, or it might not be compared to anything at all, and all participants receive the same treatment.
Once you sign up, you can’t change your mind
False! Participants can withdraw from the study at any time, for any reason. Even after signing an Informed Consent Form (ICF), it is their right to take back their consent and leave the trial. No explanation is needed for this decision, but investigators appreciate being told why, and find it helpful to know the reason for withdrawal.
Other myths and facts about clinical trials:
- “A drug will affect everyone the same way”: Factors like race, ethnicity, sex, and age can affect the effectiveness and tolerability of a drug, making diversity essential in clinical trials.
- “Children are not allowed in clinical trials”: Unfortunately, children also suffer from medical conditions and need treatments. As for any new drug, those focused on children need to be tested to identify if they can indeed work on them, and what would the correct dosage for them. According to the trial, children might be able to participate with parental consent and follow a procedure adapted to their needs.
- “People in clinical trials are hospitalized during the study”: While this might be the case in situations where the participant is admitted to the hospital due to their condition, most clinical trials are done on an outpatient basis, meaning that participants only go to the clinic for their scheduled visits.
- “My physician will tell me if there is a medical trial for me”: It is hard to keep up to date with all the clinical research being done, so your physician might not know about a study being carried out that might fit your needs.
- “Clinical trials are done in secret”: All clinical trials are conducted in countries vetted by health authorities and where results are made public. Patients, as well as the public, have the right to know these, and websites like clinicaltrials.gov collect information on clinical trials for anyone to access.
- “Clinical trials are only conducted in large hospitals”: Depending on the requirements of the study, it can be carried out in large hospitals, or small clinics. In most cases, the research is carried out simultaneously in several clinics at different locations. There is probably one closer to you than you might think.
- “Participants do not have to be alone during the process of joining a clinical trial”: during the first visit or talk with the researcher, they can have a friend or relative accompany them, and they don’t have to decide to participate in the study right then and there. Participants are given the time they need to ask questions about the study, talk to their friends and family about it, and discuss it with their physician before deciding.
- “Participating in clinical trials is costly”: Participants do not have to bear any cost since the promoter covers all expenses related to the treatment, including the study medication. Additionally, the promoter pays for all medical tests related to the study and, in some cases, even transportation costs. Their goal is to make participating as convenient as possible for participants, to avoid them signing out of the trial for obstacles or reasons unrelated to the drug.