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How a Delaware Hospital Does Cancer Clinical Trials Right

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Published on February 20, 2020

Key Takeaways

While there is an explosion in clinical trials for new cancer medicines, most patients are never told about trials and don’t participate. In Newark, Delaware a cancer center has done brilliant job of bucking that trend.

Watch as Kandie Dempsey, one of the leaders at Christiana Care, explains what you should expect from your cancer clinic and what you can do for yourself.

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Transcript | How a Delaware Hospital Does Cancer Clinical Trials Right

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:       

Hello, Andrew Schorr here in Austin, Texas, and I’m with Kandie Dempsey, and Kandie is the director of cancer research at Christiana Care in Newark, Delaware—I want to say it right – and I’ve been so impressed as she describes what they do to make all their doctors and all their patients aware of clinical trials as an option. 

I want her to describe that a little bit because, unfortunately, a very low percentage of adults in America are in cancer clinical trials. Not so where she is, so they’ve done a lot of the right things, and this is the kind of approach we need to do more of. So, maybe you could tick off some of the things you do so that people in Delaware understand the full range of their options and their doctors discuss it with them.

Kandie Dempsey:     

So, at Christiana Care, our mission is research, and we believe that if we’re not providing research as an option for treatment that they’re not getting all the options made available to them. So, every patient that is seen with a malignancy is screened for clinical trial participation, and that communication with the physicians is an ongoing collaboration so that we’re identifying potential clinical trials for their patients in real time and sharing eligibility criteria and clinical trial processes. 

Andrew Schorr:       

More than that, though, you’ve recruited patient advisory panels to help discuss how you handle clinical research, what research you do.

Kandie Dempsey:     

Yes. So, based on some publications that came out of ASCO from Robin Zahn and Rich Schilsky, we determined that we had some weaknesses that we needed to address with regard to having exemplary characteristics of research in our community. So, we actually identified oncology patient advocates to join our program to help us with sharing information about clinical trial participation and provide us with feedback about what we can do to improve our process.

So, in 2011, we convened a committee, provided educational training with regards to regulatory requirements and the clinical trial processes, phases of trials, and brought patients on board, hoping that they’d have a shared governance, that they would actually take the program and develop it with minimal input from us. And so, they developed their own logo, their own committee name—Oncology Patient Advocates for Clinical Trials—and began processes to improve communication about the system.

Some of the things that they’ve done is going out into the community to STEM programs, colleges and universities, providing their experiences with students, going to community events and sharing information about their experience with trial participation. They’re also meeting with other patients that may be considering clinical trial participation and are on the fence, and so, they’ll share what they have experienced.

In addition to that, one of the weaknesses that we’ve identified as a national problem is that there isn’t communication once the trials are completed, so we actually developed a process where, when studies are completed and published in peer-reviewed journals, that information is summarized in lay terms and put into a letter, and our patient advocates review it to determine readability, understandability, and once they give us their stamp of approval, we will mail those letters to previous protocol participants as well as their family members. 

Other things that they’ve done is when we have trials that have some complexities—for instance, I had a study that had extensive neurocognitive testing, and we determined that this may be unwieldy for us to ask patients with their specific diagnosis, so we had our patient advocates actually go through the rigors of doing the hour/two-hour computerized neurocognitive testing to make a determination whether we should participate with that at our site. 

Andrew Schorr:       

Wow. So, first of all, if you heard, they keep people informed, and I’ve said it a thousand times—treat trial participants or potential participants as investors and keep them informed. You do that. Amen. How great—a national example.

Kandie Dempsey:     

Thank you.

Andrew Schorr:       

The benefit is—the percentage of people in clinical trials nationally is very low. What’s the percentage where you are? 

Kandie Dempsey:     

Thirty percent.

Andrew Schorr:       

Thirty percent versus 3 to 5 percent nationally. So, what do you want to say, Kandie, to people—wherever they are—of what questions they should ask as a patient or for their loved one to make sure that clinical trials that might be appropriate for them are discussed? Give them a little toolkit.

Kandie Dempsey:     

So, my recommendation is the very first discussion question that you should have for your provider is whether a clinical trial is available for you. They may not have a trial locally, so sometimes, you have to be your own advocate, and part of your own advocacy may be going out and speaking to other individuals who have participated in clinical trials or have been diagnosed with cancer, or going onto legitimate websites where you can see trials available for your specific disease and review eligibility criteria. 

So, there are a significant number of resources through sites like the National Cancer Institute, American Society of Clinical Oncology, Patient Power, so that you can become self-educated and make an informed decision about how your treatment will be. 

Andrew Schorr:       

Okay. And, what if you find you’re at a place where they just don’t talk about trials at all?

Kandie Dempsey:     

Well, you could actually look at other opportunities and resources that you may be able to go to another site and see if there’s availability outside of your community.

Andrew Schorr:       

Right. Remember, you are the one dealing with the cancer. It’s your life, it’s your future, it’s your quality of life, and so, if we believe that there’s research going on—and, there’s a lot in cancer…

Kandie Dempsey:     

Absolutely.

Andrew Schorr:       

…is there something there that could apply to you, and wouldn’t it be tragic if it’s there, and you simply didn’t know, and it wasn’t brought to bear for you? So, Kandie, I want to thank you for what you do in Delaware, and really being a national example. Thank you so much on behalf of patients.

Kandie Dempsey:     

Thank you very much.

Andrew Schorr:       

Andrew Schorr with Kandie Dempsey from Delaware and remember that knowledge and discussion about clinical trials could be the best medicine.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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