How to Overcome 4 Common Barriers to Cancer Clinical Trial Access

There are 4 common barriers to clinical trial access, explained an oncology nurse.

Certain patient populations may face barriers to clinical trial access, which can have short- and long-tern consequences on cancer care for both individuals and patient groups as a whole, explained Anna Kukulka, RN, BSN, CCRC.

In an interview with Oncology Nursing News, Kukulka, assistant director of experimental therapeutics and cellular therapies in the Clinical Research Office at the University of Florida Health Cancer Center, explained 4 common barriers that patient populations face regarding clinical trial access, and what nurses and advanced practice providers can do to overcome them.

Oncology Nursing News: Why is ensuring equity in clinical trials important for all patients with cancer?

Kukulka: In oncology, specifically, clinical trials are care. Every drug that we have today to fight cancer is the direct result of a previous clinical trial, and what we have learned from that over time is that to develop accurate safety and efficacy profiles, we need a diverse and comprehensive patient population. So if we're not ensuring an equitable access to these types of treatments, now we're not only doing a disservice, really, to the patient in front of us, because they're not getting all of the options available to them, but we're failing in our mission, which is to improve cancer treatments over time and improve patient outcomes. And so really, you can't have one without the other. We need everybody participating so that we can fulfill our mission here.

In your own experience, what are some of the biggest barriers that prevent some populations from participating in clinical trials?

Sadly there a lot. I think for me, it comes down to the 4 big ones: awareness, trust in your team, money, and time.

Patients don't know what they don't know. And so our role as nurses, as clinical trial nurses, as nurse navigators, as nurses and clinics, talking about the role of clinical trials early and often, … so that they have time to think about it, rather than saving it for a really stressful situation where patients have gotten news about their progression or their treatment is not working, and they've got all these emotions going their stress, their adrenaline is kicking, and now suddenly we're talking about research versus [the fact that] we could have started that conversation 6 months ago so that they were a little bit more prepared for it.

[Regarding] trust, these patients are quite literally putting their lives in our hands. And so every opportunity we have to call, when we say we're going to call, even if it's tell them we don't have an answer yet, or to sit down and talk about next steps, talk about the what ifs—that all builds into the trust, so that when we do say, “Hey, there's a trial, it may or may not work,” they know we're in their corner.

Both of those things really have to come together, and then we're down to time and money, which are not insignificant or insurmountable, but they're a lot more tangible for us to really get our hands around to try and help with.

Have you participated in any initiatives aimed at improving diversity in clinical trials? And if so, can you share your experience in doing so?

We've got a lot of really cool things actually happening in that arena. As a cancer center, we are [National Cancer Institute]-accredited, and part of our mission is to address the population that we serve. So we track our enrollments and compare them to our catchment area demographics. Are we enrolling the people in our community commensurate with what our community looks like?

Then we review it in real time to really identify trends early, rather than later, and see why, and start talking about, why are we missing these people? I think a really good example is we saw a really sharp decline in female enrollments on clinical trials over the COVID and post-COVID period. And if you ask anybody, we all have lots of theories about why that might be. We don't really know, but it's really given us the opportunity to really look at what we're doing and say, “Are we serving these women who are coming here looking for care? Do we have trials for breast cancer, for ovarian cancer, for cervical cancer, for the disease processes that specifically affect women?” Are we working on that.

Then we actually have a staff-driven committee, called CTAS. It is clinical trial awareness services. They're really getting out into the community, and they're going to these community events and talking to the people in the community. We have bilingual staff, and they go out to these community centers where maybe there is a language barrier, and they say, “Hey, we're the face, like we're people, and we live with you, and we live in your town, and we're trying to help so that you don't feel like a guinea pig or a number or any of those kind of negative connotations that people sometimes get.”

So there are a lot of really interesting things going on, just trying to help communicate and talk to the people around us.