Deciding to Participate in Clinical Research
Treatment for cancer or another serious disease can involve a number of unpleasant moments—needle sticks, scans, the placement of ports and tubes, and the biggies like surgery and chemotherapy. So why would a person receiving treatment volunteer to take part in research on top of everything else?
There are many reasons for participating in a clinical study, also called a clinical trial. Ultimately the decision to take part in research belongs to you, the patient. The decision you make will probably be a result of a combination of diverse reasons—some large, some small, some based on scientific evidence, some based on personal attitudes and feelings about health and disease.
Some people participate in clinical studies because there are no standard treatments available for them or because the treatment they already tried didn’t work.
Others participate for altruistic reasons, such as wanting to advance medical knowledge. For example, according to Julie R. Gralow, MD, director of Breast Medical Oncology at Seattle Cancer Care Alliance (SCCA), “Some women with breast cancer sign up for clinical studies so that if and when their daughters or granddaughters are dealing with it 20 years from now, there will be better treatments.” Whatever your reasons, a clinical study may be an option for you.
Pros and Cons of Clinical Studies
As with any treatment option, clinical studies have a number of pros and cons you may want to consider when deciding whether to participate.
Some reasons to participate in a clinical study include:
- You may gain access to new interventions that are not available otherwise—and if the new intervention proves to be better than standard care, you may be among the first to benefit from it.
- If you are in a Phase III randomized study (meaning you’re randomly assigned to a treatment group) and you don’t receive the new treatment being studied, you will receive the standard treatment for your disease.
- You may get closer monitoring. This is a plus for many people who have fears and concerns that can be allayed by frequent checkups and conversations with doctors and nurses.
- You may help other people who have the same condition you have by advancing scientific knowledge of the disease and its treatment.
- By considering all of your treatment options, including clinical studies, you are taking an active role in an important decision that affects your life.
Clinical studies are not right for everybody. Some reasons you may decide not to participate are:
- In terms of effectiveness and side effects, new treatments being studied are not always better than, or even as good as, standard care.
- You may fear the unknown and the potential loss of choice from being in a study. For example, if you are in a randomized study, you will not get to choose which arm of the study you’re in; you will be randomly assigned to an arm. If the study is blinded, you will not know which treatment (investigational or standard) you are receiving. In early clinical studies, the safety, side effects, and effectiveness of the treatment are still being ascertained.
- You may not have the time. Being in a study may require more time—for example, because there may be more tests or scans to monitor your response—than getting standard treatment.
- Your health insurance plan may not cover all of the costs associated with a clinical study.
If you are considering taking part in clinical studies, talk with your SCCA team about the pros and cons, and learn more about what to expect if you participate in research at SCCA. Discuss what you learn with your health care providers, family, and trusted friends.
If you are willing to participate in a clinical study, your SCCA team can help determine if there are studies that may right for you. Read more about finding the right clinical study.
Use this checklist when trying to decide if participating in a clinical trial is right for you.