A clinical trial is the sole way that a new medicine can come to market. For cancer treatments, immunotherapy and personalized medicine offer unprecedented hope, but also an unexpected problem. As noted in this New York Times article, “There are too many experimental cancer drugs in too many clinical trials, and not enough patients to test them on.” And, to make matters worse, patient awareness about clinical trials is still low, though growing.
Traditionally, a patient learns about a clinical trial because their doctor presents the opportunity to participate, generally as a last resort, in their treatment journey. And typically, the doctor is likely to present the opportunity only if he or she is one of the investigators for that trial. But today, patient organizations and companies are helping to ensure that patients know about opportunities to participate in clinical trials, regardless of whether their current doctor is an investigator in the study.
The reasons to participate in a clinical trial are many and meaningful. Many people with serious diseases participate in clinical trials because:
- There is no currently approved treatment for their disease;
- They have not experienced improvements in their condition after using the currently approved treatments;
- They want access to a new type of treatment, even if it is not guaranteed to be as good as or better than available treatments; or,
- They want to contribute to the development of a new treatment for others with a similar disease.
Seeker Health, a digital health company focused on innovating the way biopharmaceutical companies enroll clinical trials for serious diseases, sat down with Patient Power, an online community for patients with cancer, to understand what might motivate a patient to participate in a clinical trial for cancer. We spoke to Andrew Schorr, the founder of Patient Power (patientpower.info) and a patient himself who has participated in two clinical trials.
Seeker Health: Why should a patient consider participating in a clinical trial?
A. Schorr/Patient Power: In a clinical trial, a patient gets what could turn out to be “tomorrow’s medicine today.” Clearly, some medicines won’t make it to market either due to lack of efficacy, safety concerns or other reasons. But for those medicines that will eventually make it to market, participating in a clinical trial provides earlier access to an investigational therapy. In my own case in a Phase II trial, I received an experimental combination for leukemia 10 years before approval. I believe I am alive today because of this.
Seeker Health: What other benefits may be realized from participation in a clinical trial?
A. Schorr/Patient Power: Clinical trials include very thorough surveillance protocols for study subjects. In the case of my second clinical trial participation – for a blood thinner, this amounted to a tremendous benefit. Heightened surveillance during the study revealed a second cancer that needed to be dealt with. Fortunately, there was a new, approved medicine I could start on. Had I not participated in the clinical trial, I believe that diagnosis of this other cancer would have taken significantly longer, thus negatively impacting my prognosis.
Seeker Health: What’s different about being a clinical trial subject versus a regular patient?
A. Schorr/Patient Power: As a clinical trial patient, you’re treated like a ‘VIP.’ You’re prioritized and assigned to a dedicated clinical coordinator and you never sit in the waiting room. On the flip side, given the investigational status of the drug, not all side effects may be known yet, so you’re taking a risk, but it is an informed one. All clinical trial subjects are asked to read and sign an Informed Consent, which outlines risks and uncertainties.
Seeker Health: And so, how can we better educate patients about clinical trials?
A. Schorr/Patient Power: Digital and social media play a large role. Patients and influential family members are increasingly online and once there is a diagnosis of a serious condition like cancer they are immediately searching for information and support. Patient communities like Patient Power’s “The Cancer Connection” on Facebook with more than 76,000 followers provide information and support. Campaigns like the ones that Seeker Health creates and deploys for biopharmaceutical sponsors, ensure that patients can take an action toward enrolling in a clinical trial for their condition.
Sandra Shpilberg is CEO of Seeker Health, a digital health company innovating the way that clinical trials enroll participants. Using technology and social media, Seeker Health helps medicines get developed faster and reach those who need them earlier. Seeker Health specializes in accelerating global clinical trials in serious diseases with hard-to-find patient populations, including oncology and rare diseases. If you’d like to learn more about Seeker Health’s technology and approach, please visit: www.seekerhealth.com