Combatting Misconceptions of Clinical Trials to Improve Patient Participation

There are any misconceptions about clinical trials, from how they’re run to what they’re called, that may prevent patients from agreeing to participate in one, explained Terry L. Keys, research advocacy manager, University of Kentucky Markey Cancer Center.

He discussed the ways Markey Cancer Center is working with patients to change perceptions about clinical trials.

This transcript has been lightly edited for clarity.

Transcript

What misconceptions do patients still have about clinical trials, and how does Markey Cancer Center work to overcome them?

I can tell you that from the Markey Cancer Center and the work that I've been doing with our patient advisory group, which is the clinical side of the work that we're doing, the biggest thing is that they still think that you either get the medication or you don't get the medication, or you get the radiation or you don't get the radiation. They're not understanding that you get the standard of care, and then the question is whether or not you get the extra thing or you don't get the extra thing. That's problematic because they think, “I'm not being treated for my disease.” And the answer is, you are being treated.

What we're finding out is that when they find out that they're actually getting what I would call “enhanced care,” it's not better care. Because they're in a trial, in a research study, they would be able to have more people looking at their charts. They'll have more scans. They'll have all these other things that won't cost them any money. That's the other thing. “Well, if I do that, does that mean I'm going to be out more money?” And that's problematic for them too. So how we're going to go about doing that, we're still in the midst of trying to figure that out. We know already that the biggest barriers are that they think they're going to be a guinea pig, and they think that they're going to be a lab rat, and that they may or may not get what I would call the “bag of goodies” at the end of the day. And the answer is, “No, you're going to get the standard of treatment and then it's the extra thing that you may or may not get, and that's for the benefit of science. That's why we do these studies.”

I can tell you one of the things that we've discovered at the Markey Cancer Center is how much people don't like the word “trial.” And I'm going to do a very specific example about this. I have a woman in my patient advisory group. Her name is Merlene. Merlene is a Black woman. She was a columnist for our newspaper. And we're talking about clinical trials, clinical trials, clinical trials. And I'm going around the room, and I'm asking them questions. And she said, “You know what, I just don't like that word.” And I said “Which word do you not like, and what would you want to change?” And she goes “Well, ‘trial.’ I hate that word trial.” I said, “”Well, tell me about that.” And she said, “Well, when you belong to a population…who doesn't trust the judicial system, why would we ever want to be part of something called a trial?”

Well, that was like a chest of gold that landed right at my feet. Now, we've got something that we can work on here. And I said “Alright, let's talk about that. What would be an alternative that you would want to use for that?” And so, we talked about “clinical trials” is out. What else is in? So, we talked about “study,” and then we found out that there are clinical studies that are overview studies of other research. So, we've just decided that if you just called it, “Would you like to be involved in clinical research?” And leave the trial out of it because let’s do that word association. Trial—what words come to mind when you think about trial? There was trial by fire, trial by jury, trial by judge and none of it was a positive connotation. Even attorneys don't say, “I won that trial.” The trials, what they've all gone through, they've won the case. They'll say, “We won the case,” but they didn't win the trial or they didn't lose the trial either.

And then Marlene looks up and she goes well, “What if you're guilty? What if you're innocent? Who decides that? Who decides if you're guilty or innocent?” And she goes, “It's just fraught with all kinds of things that are not good.” You might have heard me say clinical trial and then I said clinical study. We're very much trying to get that out into the public, that one way that you can get more people involved is by changing the way you describe it. And that's a perfect example of the work that we're trying to do at Markey.