On June 1, 2019, the Biden Cancer Initiative announced the launch of a collaborative effort to create an Oncology Clinical Trial Information Commons (OCTIC). The vision of the OCTIC is a shared platform where all information about oncology clinical trials can be stored and accessed, which will enable patients to be more accurately matched to clinical trials that have the potential to save or extend their lives, or that provide treatment that more closely matches their goals.
In launching this initiative, Martin Naley — the Biden Cancer Initiative’s Program Lead for Clinical Trials Association — told a story about Melissa, a woman whose lung cancer was first determined to be metastatic more than 10 years ago and who has participated in six clinical trials during the long course of her cancer care.
“Clinical trials allowed Melissa to be at three children’s weddings and the birth of her six grandchildren. She was able to continue her profession as a middle school chorus and orchestra teacher. Plus, through her experience, she has become an advocate and role model for other patients and part of a loving community that needs her.”
Of course not all cancer patients will have successful outcomes from participating in clinical trials. But all cancer patients should know their clinical trial options — and far too few do. The American Society of Clinical Oncology (ASCO) has publicly taken a stance that all trials, including phase 1 studies, are not just a way for patients to contribute to scientific knowledge; they say that trials are a therapeutic option to be considered in the context of the patient’s condition at all steps of their care, not just when all “standard of care” options are exhausted.
Today less than 5% of adult cancer patients actually participate in clinical trials. 80% of cancer clinical trials do not meet their enrollment timelines, and this slows the introduction of new treatments to more cancer patients. Publicly available information about clinical trials is hard to find and sift through, and even once you find a clinical trial that appears to be a match, the criteria for inclusion or exclusion are inaccurate or incomplete. Further, trials testing the most innovative treatments often are not available outside of elite academic medical centers.
“I may have the initials M.D. after my name but they don’t make it any easier for me to find clinical trials for my metastatic breast cancer. I can’t imagine how the “average” patient negotiates http://clinicaltrials.gov , and even when I find a promising trial it is often not accessible due to distance, Olympian eligibility requirements, or need for measurable disease (which excludes many of us with bone metastasis).” — Dr. Kelly Shanahan, California physician living with metastatic breast cancer.
Addressing these barriers will take collaboration across multiple, dedicated stakeholders, all committed to dramatically increasing the enrollment of patients in cancer clinical trials. This is why Ciitizen enthusiastically signed up to be a founding member of the OCTIC effort, and we’ll work with all who are dedicated to this mission.
Assuring people have their complete, organized cancer-related medical histories at their fingertips will not fix all of the problems with cancer clinical trials. But for someone dealing with cancer, having health data at the ready is an essential first step to finding a trial. Assuring that cancer patients have all of their health information, standardized and organized and under their control, is our mission at Ciitizen.
A patient’s Cancer Summary profile at Ciitizen will include the elements necessary to potentially “match” to a trial. As we collect records and build profiles for our cancer patient users, it will be critical that having a Ciitizen profile ultimately empowers you to leverage a clinical trial commons like OCTIC.
Our goal is to have a first release of the OCTIC before the ASCO annual meeting in 2020. We look forward to the work ahead.