Updated on November 7, 2023.
If you have a serious illness, you may not always feel like you have a lot of choice when it comes to treatment decisions. This is particularly true when treatment options are limited or there is a standard set of conventional therapies.
But for many patients, standard treatments may prove to be of limited effectiveness. In these cases, signing up to join a clinical trial that's exploring new or emerging treatments can be an important part of their care plan—and an opportunity to make meaningful decisions on their own behalf.
“In the face of a debilitating disease, patients’ ability to be proactive can provide a sense of autonomy and make them feel like true partners in their own treatment,” says Silvia Hafliger, MD, assistant professor of psychiatry at McGovern Medical School at UTHealth Houston.
What to know and ask about a clinical trial
So, how do you decide whether to sign up?
First, get the facts and have a thorough and thoughtful discussion of the pros and cons with your healthcare provider and with the healthcare team conducting the trial. Questions you might 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?
Weighing the pros and cons
Once you have gathered all this information, it’s time to weigh the benefits and risks of participating in a trial. These may include the following:
Possible benefits
- You are taking charge of your own health care 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 likely 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 health care, gain access to new treatments before they are widely available, and help others through medical research.
