You may not feel as if you have much choice when it comes to healthcare for a serious illness. But whether or not to join a clinical trial is completely up to you. In fact, that may be one of the most powerful reasons to participate. Silvia Hafliger, MD, Psychiatry, Columbia University Department of Surgery, explains, “In the face of a debilitating disease, patients’ ability to be pro-active can provide a sense of autonomy and make them feel like true partners in their own treatment.”
Related: Who is eligible for a clinical trial?
So, how do you decide? First, get the facts. Questions you should ask include:
- What is the purpose of this trial?
- Why do you think the experimental treatment may be helpful?
- Has it ever been tested before in other trials?
- Who can be in the study?
- What treatments and tests are involved?
- What are the possible risks? How do those risks compare with risks of conventional treatment?
- How will the trial affect my daily life?
- How long will the trial last?
- Will I have to be hospitalized?
- Who will pay for my treatment? Will my insurance cover the costs?
- Will I be paid for extra driving mileage or hotel stays?
- Can I stay in my own town or will I have to travel?
- Can I quit before the end of the trial? How would I do that?
- Will I know what treatment I receive?
Once you have gathered all this information, it’s time to weigh the benefits and risks of participating in a trial.
Possible Benefits
- You are taking charge of your own healthcare and can feel more proactive.
- You are helping others by contributing to medical research.
- You may get valuable new treatment methods that you can’t get outside a clinical trial.
- You can receive the best medical care at top hospitals or clinics.
- You may have fewer side effects than from traditional treatment.
Possible Risks
- New treatments or medications may not be more effective than your current care. If an experimental treatment does have benefits, it’s possible it may not work for you.
- Unexpected risks or side effects may be worse than those from the normal treatment, and may be uncomfortable or even serious.
- All your costs may not be covered.
- You may need more frequent and more time-consuming visits to the hospital or clinic as well as more complicated treatment.
According to studies, if you do participate in a clinical trial, your outcome will be as good as, if not better than, those who do not participate no matter what treatment you receive. The bottom line: By joining a clinical trial, you can play a more active role in your healthcare, gain access to new treatments before they are widely available and help others through medical research.
Related: What are the phases of clinical trials?
Medically reviewed in January 2020.
