This content was written by Jessica Severt RN, BSN, Clinical Research Nurse Coordinator at Thompson Cancer Survival Center.
Clinical trials are how we discover new and superior treatments, better ways to prevent side effects, and improve survival rates for cancer patients. According to research, only approximately 3-5% of adult cancer patients participate in a clinical trial. There are a lot of misconceptions and myths about what a clinical trial involves, and I hope to clear some of those up in this blog post.
Myth #1: I will be treated like a guinea pig.
Oh, quite the opposite! Most clinical trial participants report they were fully informed of the risks and benefits and treated with respect and dignity. Many participants feel that they received extra attention and have more people observing them since they had a study nurse assigned to them.
There are strict guidelines in place that ensure that all patients participating in a clinical trial are treated honestly and ethically. Before any investigational drug can be given to humans, scientists must complete rigorous testing and screening.
Myth #2: If I join a clinical trial, I might get a “sugar pill” or placebo instead of a real drug.
In cancer clinical trials, a placebo is only used if there is no other existing treatment for that cancer type, and that is so the study can compare a new medication to the placebo. Placebos are rarely used in cancer trials because the best available treatment (called the “standard of care”) is used. More often than not, an investigational drug or a placebo is given in addition to the standard of care drugs for that particular cancer.
Myth #3: Clinical trials are only used when I have exhausted all of my other options.
Not true!! There are trials available for every stage of cancer and even trials for cancer prevention. Clinical trials can allow access to medications and treatments that are up and coming and not available otherwise.
Myth #4: Once I enroll in a clinical trial, I will not be able to change my mind.
As the patient, you are always in full control of your treatment plan. If you decide that you no longer wish to participate in a trial, you can withdraw at any time.
Myth #5: Clinical trials are dangerous because they use new practices and medicines.
Because clinical trials are designed to answer an important question, research does have some level of risk. However, clinical trial participants receive investigational drugs ONLY after that drug has gone through extensive testing.
This testing indicates that the drug is likely to be safe and effective in humans. The safety of all clinical trial participants is a top priority and even while the clinical trial is ongoing, the researchers are frequently and extensively assessing the drug to make sure it is still safe for participants to continue on the trial.
Myth #6: Being in a clinical trial will not help me.
If you choose to participate in a clinical trial, you have the unique opportunity to receive an investigational drug that is not available for patients outside of the trial. The Thompson clinical trial research team watches our trial patients closely, and depending on the trial, may provide opportunities for additional tests, lab work, and clinic visits that might not be a part of the usual care.
Patients who participate in clinical trials play a key role in advancing medical science that help more people live longer and better lives.
Myth #6: Clinical trials are a huge time commitment.
Every study is different. Studies do require tests, procedures, clinic visits, and scans and sometimes that calendar can seem busy. Many trials do not require much more than what would normally be performed while receiving a standard cancer treatment regimen.
With that being said, a patient participating on a clinical trial is being closely monitored. These additional visits, labs, or scans help the trial doctors and study nurses monitor patients more frequently and address any concerns quickly.
All of the obligations and time commitments are thoroughly explained to the patient by the study doctor and nurse before any consent forms are signed.
Myth #7: Being in a clinical trial will cause me to release all of my personal health information.
Sharing certain clinical information helps physicians, patients, and healthcare providers make informed treatment decisions. While sharing this information and data is important, protecting the privacy of all patients participating in clinical trials, and ensuring that data is shared responsibly, is of the utmost importance.
Multiple safety measures are in place to make sure that your information is protected. Prior to consent, patients are made aware of what specific information will be collected and how it is used, shared, and protected. The information that is reported to the study, such as the patient’s medical history or blood pressure, is separated from any of the information that could identify the patient, such as birthday and individual names.
Clinical trials are an important tool used to discover new treatments, as well as new ways to detect, diagnose and reduce the risk of cancer. Patients who participate in clinical trials receive specialized care and close monitoring from the clinical trial staff. While participating in a clinical trial, a patient can know they are receiving early access to treatments, contribute to the medical knowledge and advancement of cancer treatment and have the potential to impact how other patients with cancer are treated in the future.
Learn more about the clinical trials program at Thompson Cancer Survival Center.