Patient Advocacy and Oncology: How A Community Cancer Network is Making a Difference

For you as a patient, what were the parts of the clinical trial that were daunting and how did you get through that? [5:15]

Of course, when I was a patient I had no idea. Patients don’t know, like this is an academic setting, this is an independent setting, but the reason why I’m sharing that is that the clinical trial, getting back to the daunting part of it, is that I wasn’t looking for a clinical trial. That surprises a lot of people because it’s easy to assume, “Oh, Rose is this director and she must’ve done all this kind of homework to get on this great trial.” I think when I first got diagnosed I did a little bit of Googling, but then it was very overwhelming and it got me really scared, especially with the subtype I had… There’s a lot of great resources out there, but still the physician, in my mind and my experience, not just my personal experience, but talking to cancer patients and nurses across the United States, the physician is the most impactful person in helping the trial enrollment.

So, how do we get the physicians to be aware of what’s going on and how do we also get the sponsors and the CROs to get the word out, partner with the physicians, and get this ecosphere moving forward? [9:30]

What’s happening nationally is that there’s even more conversation around getting the primary care providers to start talking about clinical trials, just in general. Just as part of the conversation, even before a person is diagnosed with cancer. Making clinical trials just be part of an ongoing conversation. That’s actually one of my very specific recommendations for the clinical research groups, is that clinical trials shouldn’t be something that is just presented when a cancer patient’s diagnosed. If you think about it this way, just as a general member of the public, we’re all very aware of that. Preventing cancer is a dialogue that goes on year round, that we want to prevent cancer.

But what things should [patients] be asking their oncologist about their diagnosis to support them as they move forward with this new information? [14:00]

I think one of the things I would like to remind patients to do, well, there’s two things, is one, in that moment when you’re sitting there, face to face with your oncologist and you’re trying to absorb everything, exhale, physically exhale. Then, ask the question. Let’s say they didn’t offer you a clinical trial, say, “Is there any other treatment, for example, a clinical trial that I might be able to participate in?” If they come back and say, “Well, we’re not offering any clinical trials here at this location.”

The patient doesn’t have to stop there. The patient can say, “Okay, can you connect me with any clinical trials elsewhere? Or, if anything comes up, can you write a little note in my medical chart that I am interested in clinical trials?” Then, the patient can stop right there because we’ll just take things little steps when you’re a patient. But that is definitely a way to feel somewhat in control of your situation, to feel hopeful and, again, to feel empowered.

I know one of the technologies that you’ve worked with is COA. Can you talk a little bit about your experience there, especially with CPAN? [18:40]
Let me talk a little bit about COA. So, as I was mentioning earlier, the Community Oncology Alliance, if you think of this as an umbrella organization, that we represent the cancer centers, the independent, and this means that the physicians own the cancer center, and it’s where the majority of cancer patients receive their care…within CPAN, CPAN is COA’s Patient Advocacy Network. What we do within CPAN is we now educate the patients and survivors that were treated in these independent settings about the value of community oncology.

How can sponsors and CROs help reduce that burden so the person who’s going through this, as we just talked about, has so many other factors going on in their mind, that they can focus on getting well and thinking about those things and still participate in the study? [29:25]
Just going back to what the organizations can do is just make it easier. Does the patient have to travel this distance? Is there a local lab where they can do it? Can they do something through a telephone call versus a diary entry? Oh, I think health literacy is a really important factor that we have to keep in mind. Is that not everyone is comfortable with some of the tools that are being used to maybe track your own health outcome as you’re going through the process.

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