Empowering Patients With Cancer Through Clear Clinical Trial Communication

December 30, 2024
Darlene Dobkowski, MA
Darlene Dobkowski, MA

Darlene Dobkowski, Managing Editor for CURE® magazine, has been with the team since October 2020 and has covered health care in other specialties before joining MJH Life Sciences. She graduated from Emerson College with a Master’s degree in print and multimedia journalism. In her free time, she enjoys buying stuff she doesn’t need from flea markets, taking her dog everywhere and scoffing at decaf.

A clinical trial manager emphasizes the importance of a phased approach to educating patients about complex protocols and potential side effects.

Open communication is prioritized in the clinical trial process for patients with cancer, beginning with a general discussion of participation before study-specific details are presented to ensure potential participants are fully informed and empowered, a clinical trial manager said.

This step-by-step approach may prevent patients from feeling overwhelmed by the details behind a clinical trial, Mikaela Dougherty, clinical trial manager at Mount Sinai Ruttenberg Treatment Center in New York, said in an interview with CURE®.

Dougherty was one of the seven MPN Heroes honored in an in-person event in December 2024 for her work in the clinical trials space. We also sat down with Dougherty ahead of the event to learn more about the strategies her team uses to educate patients about complex clinical trial protocols and potential side effects.

Transcript:

So when we first identify a potential clinical trial patient, myself or a clinical research coordinator will go in the room with the physician, the principal investigator, and talk with the patient in more of abstract terms of kind of what it's like to be on the clinical trial, not necessarily the specific of that trial right away. Because when we talk about clinical trials, patients can get very overwhelmed, especially if it's their first one. So we like to take it a step by step.

You know, our first conversation is initially, you know, what we do, what clinical trials are, and then we'll go into how this study specifically might help them. And the physician will go over, you know, the potential side effect profile, our plans of how we could — we'll mitigate those side effects. And then someone like myself would go into more detail about what they could expect while being on study.

And I think it's really important that someone like myself does their due diligence to really ensure that the patient fully understands the commitment of what it's like to be on the study, because it's — it can be overwhelming and it's time intensive. So especially for patients that are still working full time, we want to make sure that they have the resources available to them, you know, either setting them up with social work or patient advocacy groups, where they can help them find the resources that they need to ensure that it's not taking over their life.

You know, I think that's something that our team is really proud of, is that we want the clinical trial to extend your life, enhance your life, but not feel like it's taking over your life, where you can't enjoy the things that you want to enjoy, like going on vacation. So we make our patients aware that, you know, if, if you have stuff planned, we want to make sure we can still accommodate all of those things. So, you know, we're very open and honest with our patients and in hopes that we get that back.

So I think doing all of those, kind of guiding them through what it's like to be on a study, and then also talking to them very honestly about the side effects, and also our mitigation plan and that we want to know everything. I think sometimes patients, they don't want to share with you, the side effects, because of fear of being taken off the trial. But we make it very clear to them that, you know, a lot of the side effects, there's mitigation tools and, you know, ways that we can prevent them, or if they do experience them, make them more tolerable.

So, you know, we all work together and within our research team to ensure that the patient feels comfortable and that their questions are always answered. And also, we tell them that this is an ongoing journey and an ongoing discussion about participation.

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