According to the National Cancer Institute, less than 5% of adult cancer patients sign up for cancer clinical trials. But how is this possible if clinical trials are considered the backbone of medical research? It may boil down to the fact that many people have misconceptions about what clinical trials are and how they operate. In fact, I have been guilty of this… I remember when our Oncologist suggested a clinical trial for Alan’s sarcoma… I immediately assumed that meant we were out of treatment options and at the end of our rope.
Fast forward to today… I read a fantastic article on cancer clinical trials written for the Cleveland Clinic’s Health Hub, a free health information website and eNewsletter. It was so good that I’m reposting the article below … after all, knowledge is power. Let’s share the power!
“People have a lot of misconceptions about cancer clinical research trials. They might think patients mostly just take sugar pills instead of receiving actual treatment. Or they may think clinical research studies are only for people who have no other options.
These and many other common beliefs about cancer clinical research trials are simply not true, says Joshua Beaver, Research Program Manager for Solid Tumor Oncology at Cleveland Clinic.
Mr. Beaver and his colleagues lined up a list of the Top 10 myths that they frequently hear about clinical trials and set about shooting them down one by one:
Myth 1: Participating in clinical research provides no benefit to me as the patient
In fact, trials give patients access to the latest drugs and procedures. Studies show that patients who participate in clinical trials have outcomes at least as good, if not better, than the general patient population.
Myth 2: My doctor can tell me whether or not to consent to clinical research
A physician’s job is to help a potential clinical research patients weigh the pros and cons and otherwise educate them. Your doctor can’t give you a “yes” or “no” answer or try to predict whether a particular treatment will work or not. Instead, think of your doctor as a helpful resource in making an informed decision.
Myth 3: Researchers treat patients like guinea pigs
“This is far from the truth,” Mr. Beaver says, mentioning a survey finding 97 percent of trial participants experienced respectful treatment and care exceeding their expectations. Often, patients will not even feel like they are part of a study because clinical trials incorporate the best available medicine. Researchers will then adjust treatment to see if enhancements can improve patients’ quality of life or response rates.
Myth 4: Clinical research patients are taking sugar pills
Researchers never use sugar pills in place of the best known treatment for a given cancer, and they are very rarely used in clinical cancer trials whatsoever, Mr. Beaver says. “Patients who join clinical trials will never sacrifice quality of care.”
Myth 5: Health insurance won’t cover the cost
Check with your carrier but the chances are good that coverage will extend to the full cost of your treatment.
Myth 6: Cancer clinical research studies are for people who have no other options
Sometimes clinical trials are a last resort. But many times they simply involve a simple addition or adjustment to a standard treatment plan that can provide patients with a better quality of life.
Myth 7: You need to live near a major hospital to participate
Many clinical trials take place at regional hospitals. “Some trials even extend to local cancer clinics and doctor’s offices,” says Mr. Beaver.
Myth 8: Informed consent exists primarily to protect researchers’ legal interests
Informed consent provides patients with information about their rights as a participant to help them decide whether to participate. Mr. Beaver adds, “The consent process is actually designed to avoid ‘legalese’ and to make absolutely sure that it is understandable to everybody.”
Myth 9: Once you sign the informed consent form, you’re legally bound to participate
Patients have the right to decline participation at any time. Their doctors will then switch to the standard treatment for their condition.
Myth 10: Patients can’t expect medical personnel to keep them informed
Physicians, medical professionals and research staff are all available at any time to help patients. “We know and appreciate that patients’ willingness to participate is what makes cancer trials possible,” Mr. Beaver says.”
Cancer Hope Network has volunteer cancer survivors who underwent a clinical trial and know what you are going through, call us 877-467-3638.