Breaking Barriers in Cancer Research: How Advocacy and Compassionate Care Enhance Clinical Trial Access

In a Pharmacy Times® interview, Terry Keys, research advocacy manager at the Markey Cancer Center, University of Kentucky, shares insights about the barriers to clinical research preventing patients from accessing clinical trials, citing the importance of education, language, and implementing compassionate care.

Pharmacy Times: Can you discuss the programs in place at Markey Cancer Center that advance cancer care access?

Terry Keys: Well, in the last 2 years, we started what we're calling our research advocacy program, and that's all about how we're getting community outreach and engagement into every stage of outreach. Every stage of outreach that we have at the at the University of Kentucky is bringing in patients, bringing in caregivers, and bringing in community-based organizations who are working with those same patients and caregivers, so that we can bring those individual voices into the work that we're doing with our researchers. And that they're a part of the process from the very beginning of the research study, so instead of being the “oh, it would be nice to have had that at the very beginning of the research study.” So, that program itself is actually getting them embedded into the research process.

Pharmacy Times: What are some of the most significant barriers patients face when trying to engage in cancer research, and how can advocacy help mitigate these barriers?

Keys: Probably the biggest thing is this language barrier, this language of not being able to understand what the researchers are trying to do. So, if you're reading a research journal, might get something out of the summary, but past that, you're not going to understand any of it, because there's all of these research tomes right completely over everybody's head. And I've been around the research group for 15 years. I've sat through over 300 1-hour presentations on cancer, the latest advances in cancer research, and I can make out some of it now after all that exposure, but there's no way that I would have even been interested in knowing until somebody in mainstream media had gone through and reported it so that I could understand it well.

Part of the work that we're doing at the Markey Cancer Center is that we're not only bringing the human experience back into the world of science, but we're also telling the science we need to understand what you're doing. Please tell us what you're doing so that we can support you in that. So, support from all kinds of people makes a huge difference to these researchers. The terminology I like to use is, “if you have research and you can explain it in such a way that the lay public can understand it, then they're more likely to believe it. And if they believe it, they'll trust it. And if you've established that trust, they will come back to you to find the answers and not go out into the world and look for it.” I mean, they might look for it, but they're going to come back to you for the truth of the matter. And if you get them to trust it, then they're going to take control of their health. They're going to get their screenings, their mammograms, and their colonoscopies when they're supposed to get them, and not when something's going wrong. They're going to have their children vaccinated for HPV and measles and all these other things, so that their children have a better life.

We know that we could practically eradicate cervical cancer. If our young people were vaccinated against HPV, and if we did that, how much better are their lives going to be? Now everybody at the beginning thought that there was something that only affected young girls and women, but we found out it's not that. It's for boys and men too. So, if we take care of HPV, then we don't have women with cervical cancer. We don't have boys with penile cancer or anal cancers. And now we know that it's part of a head and neck constellation, too. We have people with fewer throat cancers, because if they smoke and they drink and they have HPV, they're even more likely to have a cancer of the head and neck, and so these are simple things that people can do right now. Get these vaccines and they will protect their children and their children's children all down the line. And that's the type of work that happens when people understand what we're trying to accomplish, and the simple things that can happen.

On top of that, if you trust them, you're going to ask them a hard question, “is this safe for me? Is this really safe for me? I want to know.” And you're going to go to that trusted source, and they're going to tell you, yes, this is tried and true, and it will save lives.

Pharmacy Times: How does terminology and word associations impact patients’ likelihood to participate in clinical trials or research?

Keys: In addition to the word play that we used on the word clinical trial, we went a little further with it, past the trial stage. It was actually prior to that the word trial. And so, when I say red, what do you think of, and people said? Apple or something. And if I say sky, they would say, “oh, blue or clouds or something like that.” But I said clinical trial, and without pause, [patients said] guinea pig lab, brat and last hurrah. Are any of those positive? Absolutely not. They don't want to be experimented on. They think that it's the last thing that's available to them.

And so, there's this whole education process of, how do you go through that? Well, if you don't say the word clinical trial, they can't have that word association. But if you say clinical research, they think it's research, it's science. It's moving things forward, and not something that's actually a harbinger of what's going to happen to them. So, it's just even the simplest things of just digging in and asking them the questions, a follow up question, that's how you find out that information.

Pharmacy Times: Looking forward, what trends or innovations do you think will shape the future of patient advocacy in cancer research?

Keys: Well, this kind of one of the reasons why I'm here today, is to talk about patient advocacy. And I think the way that, I hope that we move forward, is we start talking to the people who are at the end result of the research that we're doing for our treatments. So, in our particular cases, the people who are in our research areas are still talking with patients or touching humans. They're looking through microscopes, they’re looking into petri dishes, cell cultures, lab animals, those types of things. But behind, when they get finished with that, and it goes out into the public, it's affecting real people. So, I use the term all the time, could we heal their person and let them still feel their feet and their fingers so that they could run the races that they like to run, or they can do the craftss that they want to do, or feel the touch of their child. Could we do that? Can we kill their cancer and then allow them to live a fuller life? Because if we do that, they're going to have many more years of enjoyment, regardless of how long that is. They want to be the same people that they were before they got a cancer diagnosis. And so many times, when they get through the treatments, they have something that doesn't allow them to live their life to their fullest. And so that's kind of my goal. My personal goal is we want them to be able to have as full a life as they possibly can, and it shouldn't have to be that interrupted from just trying to get themselves healed of a disease.