Understanding the Challenges Preventing Cancer Patients from Joining Trials

In a recent video interview with Applied Clinical Trials, Matt Robinson, PhD, senior director, oncology research program, National Comprehensive Cancer Network (NCCN), discussed the current state and challenges of cancer patient participation in clinical trials. Barriers to participation can include lack of understanding, economic burdens, and implicit biases. Robinson highlighted solutions such as increased education, legislation like the Clinical Trials Modernization Act, and engaging patients early in trial design. He also touched on the use of technology, such as biomarker testing and wearable devices, which can also enhance recruitment and reduce burdens.

ACT: What are the primary barriers that prevent cancer patients from enrolling in clinical trials, and how can stakeholders address these challenges?

Robinson: I think, like any complex problem, it's multifactorial. There are patient associated factors, through a lack of understanding of what clinical trials are, what it means to participate in clinical trials, can certainly decrease participation. It can even result in lack of trust in the medical system itself. Also, inability to find trials. Trials, by their nature, are complex, and as we've developed more advanced types of therapies, ones targeting specific mechanisms or pathways that drive cancer, we're looking to enroll subsets of subsets of patients, not an all-comers sort of scenario. So, understanding what trials I would be eligible for if I were a patient is more difficult.

There's also provider associated barriers. Data supports the fact that African Americans are underrepresented in our clinical trials, and there can be multiple reasons for that as well, but those can be exacerbated by the preconceived notions. Clinicians say, well, African Americans don't participate in trial, so we even see that they aren't even offered the option of, so there's a sort of an implicit bias going in that can limit participation.

Then finally, there's economic issues. There's an undue economic burden that can be placed on patients, and that can be both time as well as monetary. When you think about the way trials are run today, they're often centralized, require patients to come back multiple times for visits or lab works, imaging, etc. That can take a toll on what patients have to do, days off of work, childcare, just the cost of lodging at the sites, and the hours it might take them to drive to where the trial is being held.

Just like there's a multifactorial reason for the for the barriers, I think there's multiple ways that you can address it—education. The NCCN, as an example, provides webinars and informational materials designed specifically for patients, to educate them, not only on their disease, but also on understanding the purposes of trials. There's legislation that is currently looking to be enacted, an example of which is the Clinical Trials Modernization Act, which the NCCN, as well as a number of many other patient advocacy groups support. It's designed to reduce economic burdens for those patients that we just discussed.

Then finally, the pharmaceutical industry recognizes, I think, is beginning to put an even bigger emphasis on the importance of the patient voice in trial design, so engaging those patients earlier, the patient advocacy groups, early in the trial design to really understand, what are they going to be willing to put up with in a trial? What are the important outcome measures for them as compared to something else? Lots of ways to address the question or the problems.