L. Michael Glode, MD, FACP, FASCO, is a professor emeritus at the University of Colorado Cancer Center. He previously served as chair of ASCO's Integrated Media and Technology and Cancer Education Committees. He is the author of prost8blog, a blog to help patients and their families understand various aspects of prostate cancer.
Back when the internet was in its very early stages, I had the privilege of helping ASCO create its first website. As part of that effort, I wrote an introductory article in 1996 to help my colleagues understand what I felt lay in the future. In addition to trying to explain how browsers and the internet worked as an amateur early adopter myself, I wrote, “Oncologists will increasingly act as information guides rather than information resources for patients and their families with cancer.”
Today, that theory has been put into common practice. With all the information available online, people with cancer now frequently access resources that may not have even existed in the past. The internet has had a major impact in empowering patients to be their own “information experts” and connect with others with similar health challenges.
This newfound authority is especially important when it comes to clinical trials. Clinical trials are studies that use new treatments or tests with the goal of improving care for people with cancer. With thousands of clinical trials underway at any given time, you can understand why it might be difficult for your doctor to keep track of all of them. So, what can you do to take advantage of the possibilities for participating in a clinical trial? Here’s what to know.
Finding a clinical trial
First, you’ll have to find a clinical trial that’s a match for you. To find a clinical trial, visit the National Institutes of Health’s website, ClinicalTrials.gov. There, you can choose your condition and find which clinical trials are currently available and are recruiting new patients. You can further narrow down your search results by country, state, or type of treatment, like immunotherapy. Once you find a clinical trial that interests you, you can click on it to see what will be involved and who may join. If you match the inclusion criteria and none of the exclusion criteria apply to you, then you might be a good fit for participating in the clinical trial. Inclusion criteria are the clinical conditions you must have in order to participate in a clinical trial. Exclusion criteria are the conditions you cannot have in order to participate. Be sure to also think about whether you are able to or willing to travel to the site of the clinical trial. Read more about finding a clinical trial.
After you’ve found a clinical trial
Once you’ve found a clinical trial that could be useful in your situation, make an appointment to speak with your doctor about the treatment being investigated. This discussion will probably take more time than your “usual visit,” so notify the clinic that you will want extra time for your appointment. A 30-minute appointment in a room with an internet-connected computer should be enough. If you can, print out the important information about the clinical trial ahead of your appointment so you can show it to your doctor. The “Study Description” information down to “Study Design” should be all you need.
If you or your doctor have questions about the study, there is a phone number to contact someone involved with the clinical trial. Typically, this person is a research nurse. If it is possible, try to have your doctor present during this call, because your doctor may have access to information in your medical record that the research team may need to know.
Finally, talk with your doctor about what you can expect from specific clinical trials. For example, it is important to know that you might be randomly assigned to a group that does not receive the experimental treatment. Another example is to know what phase of clinical trial this is, so you can know how much the treatment has been tested in other people.
If you and your doctor decide a clinical trial is right for you
If you and your doctor have discussed the clinical trial and agree that it’s the best choice for you, then your health care team will need to send your medical record to the study location. It may be helpful to double check that you meet the eligibility criteria at this time.
Be sure to ask the research team about what the study will require from you. For instance, in some clinical trials, participants must go to the research institution every month or even more often. However, some of these studies can be done where you normally receive your care.
In our fast-moving, internet-enabled era of medicine, this is how I see patients finding and joining cancer clinical trials. The shared decision making of cancer care means a patient should feel empowered to do their own research, talk with their doctor about whether a study is right for them, and work as a team on their care.