Through our research on the recently released Preferences and Perceptions in Clinical Research infographic, we learned that while 52 percent of patients would prefer to get information about clinical trials from their primary physician, only 20 percent actually do.
Whether you find out about clinical trials through a healthcare provider or on your own through Internet sleuthing, it’s important to talk to your primary care physician or specialist before making the final decision to join a trial. On their website, the Alzheimer’s Association points out that your doctor might be uniquely qualified to give advice on whether participating in a clinical trial might be right for you, since he or she knows both you and your condition. They can also help you collect all the specific details about your health—clinical diagnosis, tests used to make the diagnosis, current and past treatments, etc.—that will help you more easily find a clinical trial that matches your particular situation.
Unfortunately, only a small percentage of patients are even aware that clinical trials are an option that they could ask their doctors about. The National Health Service in the United Kingdom has set out to change that with efforts surrounding International Clinical Trials Day, which is coming up on May 20. One such effort is the “OK to ask” campaign, which encourages patients to ask their family doctors about clinical trials, and to find out whether participating might be right for them or a family member. Though these efforts are focused in the UK, we think it might be beneficial to spread the word here in the states as well. It is okay to ask your doctors and specialists about clinical trials, and that by doing so you may be helping to bring about better treatment options for future generations.
Once you’ve decided to ask your doctor about clinical research, what are some the things you should ask? A lot depends on your particular disease state, and what factors are most important to you in deciding whether or not to participate. Many patient advocacy groups have webpages devoted to lists of questions you might consider. Check out the National Cancer Institute, the Alzheimer’s Association, and Cancer.net for a few examples.
Here are just a few of the suggested questions, adapted from the National Cancer Institute and Alzheimer’s Association sites:
- What is my official clinical diagnosis?
- What tests were used to diagnosis my condition and/or determine what stage I’m in?
- What medications am I currently taking?
- Do I have any other health conditions?
- What tests and treatments will be given?
- Why do the researchers believe that the treatment being studied may be better than the one being used now?
- What are the risks?
- How do the possible risks and benefits of this trial compare to those of the standard treatment?
- How long would I be in the trial?
- How might the trial and/or treatment affect my activities?
- Who can I speak with about questions I have during and after the trial?
- How will you keep you (the primary care physician) informed about my participation in the trial?
- How will my health information be kept private?
- What happens if I decide to leave the trial?
- Will I have to pay for any of the treatments or tests? What costs will my health insurance cover?
- What are my other treatment choices, including standard treatments?
What questions might you add to the list?
All in all, when discussing clinical trials with a doctor, researcher or loved one, it’s a good idea to be prepared. More and more services are emerging that help patients learn more about clinical research and find trials that may be suitable for them. Check out our “Which Clinical Trial Matching Service Is Right For You?” blog post for a few tools that could help you find specific trials to discuss. Centerwatch, CISCRP, and ClinicalTrials.gov are also good resources for general information about clinical trials. Asking the questions could be first step on your path to becoming a medical hero, and helping to bring forth new and better medicines for those who live with your same condition now and those who might in the future.