Carolyn Vachani, RN, MSN, AOCN The Abramson Cancer Center of the University of Pennsylvania
Physicians and researchers all around the world are studying ways to prevent cancer, improve diagnostic tests and cancer treatments, and enhance the quality of life of people living with cancer. But how much do you really know about cancer research?
The National Cancer Institute (NCI) is the principal government agency funding cancer research. This money comes through the National Institutes of Health (NIH).
The NIH & NCI fund research at the NIH Clinical Center in Bethesda, Maryland, as well as many other medical centers in the United States.
Unfortunately, the NCI budget has remained stagnant for the past 5 years. This has caused a decrease in the number of projects that can be funded and decreases funds to some projects already underway.
In addition, the NIH budget has failed to keep up with inflation over the past 5 years.
Fortunately, numerous private foundations and public companies see the importance of cancer research and fund billions of dollars in research every year.
There are several types of cancer research:
Basic science, which studies basic cancer components in the laboratory. This may include cell function, cancer genetics, and research in small mammals (i.e. mice).
Translational research, which is defined as the movement of discoveries in basic research to application at the clinical level.
Clinical research includes studies in preventing cancer, improving diagnostic tests, evaluating new therapies to treat cancer, or looking for ways to improve quality of life in people with cancer (also called supportive care).
An Institutional Review Board reviews all cancer research studies involving humans. This is a group of medical specialists, ethicists, and patient advocates who must give approval before any trial can begin and who monitor the trial as it progresses. They are charged with protecting the safety and welfare of all participants.
Patients may have signed consent forms for procedures or therapies in the past, but informed consent for a clinical trial consists of two parts: a consent document and an informed consent process.
Every study participant must receive, review, and sign a consent form. This form reviews the details of the study, what to expect, any possible risks or benefits, alternatives to participating and your rights as a participant. A person can withdraw from a trial at any time, regardless if they have already signed the consent form.
The informed consent process is the responsibility of the physicians and nurses running the study. They must provide you with ongoing explanations to help you make informed decisions about your participation. Prior to signing the consent form, the research team will explain the trial and as the study progresses, keep you informed of any new information that may affect you. Informed consent is an ongoing process and participants have the opportunity to ask questions or raise concerns at any point in the process.
Why participate in clinical trials? There are several reasons, including: finding new therapies, helping patients who come after you, receiving cutting edge care when standard therapies have failed. Ultimately, clinical trials aim to increase survival.
Pediatric cancers are a great example of the success of clinical trial:
Cure rate of <10% in the 1950s, 55% in the mid 70s to >80% now.
This is largely because 75% of children with cancer are treated on a clinical trial.
Only 3-4% of adults with cancer participate in a clinical trial. One study found that 85% of patients were interested in participating in a trial, but only 9% had been told that a trial was a possibility.
Common myths about participation:
I’ll be treated like a guinea pig.
Actually, studies have shown that more than 95% of trial participants felt that they were treated with dignity and respect.
My insurance won’t cover the costs.
Actually, most companies (including Medicare) do cover costs and in some cases, a sponsor will cover them if not. Discuss this issue with your team.
I might get a placebo.
There are cancer studies that use placebo when there is no standard treatment for that disease, but this would always be detailed in the consent process.
I’m too old for a clinical trial.
25% of trial participants are over 65, but 63% of cancer patients are over 65! So, researchers need seniors to participate to learn more about treating this population.
So, how can I get involved?
Understand your cancer. Know the diagnosis, stage and what the standard treatment is.
Learn more about clinical trials on OncoLink or through the NCI.
Learn about new therapies by educating yourself through conferences, books, the Internet and other patients.
Find trials through your physician, by getting a second opinion at a large cancer center, or looking online.