A Conversation with CRI ImmunoAdvocate Karen Peterson

Karen Peterson shares her journey from an immunotherapy clinical trial to patient advocate working to improve clinical trial literacy

Clinical trials, which aim to help patients while also advancing our knowledge of human biology and disease, are a source of immense progress in modern medicine. In cancer, clinical trials can be lifesaving, as CRI ImmunoAdvocate Karen Peterson can attest. In 2017, she enrolled on an immunotherapy clinical trial that put her metastatic breast cancer into remission.

Unfortunately, as Karen noted in her recent blog post, many patients—in particular African Americans — miss out on the potential benefits clinical trials offer, especially when it comes to immunotherapy. Of the nearly 60,000 people who participated in pivotal immunotherapy trials conducted over the last twelve years in the United States, only 2% were Black.

There are reasons for this, though as she acknowledged, “the answer does not come neatly packaged, or easy to unwrap or digest.” Nonetheless, it is a disappointing trend that must be addressed. As Black History Month draws to a close this year, we followed up with Karen to hear more about her journey to an immunotherapy clinical trial and how her experiences led her to become a prominent patient advocate working, “to help other patients of color understand the complex and sometimes skeptically-viewed world of clinical trials.”

“I understand we’re skeptical, as we should be. I understand that we’re hurt, I understand that we remember very clearly, not even vaguely, but clearly what has happened in our history. But at the same time, I’m here because of cancer research,” she said before later adding, “I just went and sought out the best care possible and I want everyone else to feel comfortable doing that too.”

Among her many endeavors, Karen Peterson is the founder and chief patient advocate of Karen’s Club, where she works, “to build trust, credibility, and health literacy by providing free 1:1 consultations with patients and families.” As of January 2023, this goal is now supported by a grant that Karen’s Club was awarded in partnership with New York City’s Mount Sinai Hospital to improve clinical research literacy in patients diagnosed with cancer.

TRANSCRIPT

Arthur Brodsky, PhD

Hello, I’m Dr. Arthur Brodsky, associate director of scientific content at the Cancer Research Institute (CRI). And today I’m very grateful to be joined by CRI ImmunoAdvocate Karen Peterson. In 2015, Karen was diagnosed with stage one triple negative breast cancer. And while several rough treatments gave her temporary relief, the cancer returned as stage four metastatic cancer in 2017. After being told she had one and a half to two years left to live, she vigorously researched her options and discovered a phase 1 immunotherapy clinical trial. Eight weeks after starting, her first CT scan showed a tumor reduction of 72%. And in 2020, she was officially declared in remission. Thanks for joining Karen!

Karen Peterson

Thank you for having me, I appreciate it.

Arthur Brodsky, PhD

What were some of the barriers that you encountered? And how did you deal with them?

Karen Peterson

That’s a great question. Thank you for asking that. I think one of the biggest barriers for me was really getting up to speed with understanding what the tools are and what I needed to do to make an informed decision. Those necessary things, landmarks that you had to be there in order to go, ‘okay, I need to do this in order to move forward to get something else.’ And what I mean by that is like, I can remember having to get biomarker testing, but originally facing a barrier with my original oncologist indicating that that was something that was not in her wheelhouse. That was not something that I should be trying to attempt to do. And I understood the value of it.

And so again, having access to those tools, and understanding the value of that, how important those tools are. So, I guess that sort of transitions into health literacy. It was huge. I had to get up to speed with my diagnosis and what that meant, and who was out there doing the research. Can I have a conversation with them? How does this research impact my life? How is it valuable to me? Overcoming those hurdles, and really getting comfortable with scientific information so that I can have these conversations was really important.

Arthur Brodsky, PhD

What kind of advice would you have, when it comes to patients and interacting with their care team and making sure that they can get the best possible help from them?

Karen Peterson

I think it’s really important not to try and do this journey on your own. I did it. I was successful. But I wouldn’t recommend that for anybody. It’s difficult. It’s isolating, so think I would say find your tribe. And then you’re probably like, well, what does she mean by that? And I mean, your tribe, you could build it like, you find that social worker, you find that friend, because you need somebody maybe to take notes while you’re in the doctor’s office. So, to run ideas past. You find that medical expert, and I’m talking about someone who has deep roots in the research community, so there are organizations like of course, the American Cancer Society, CRI, Cancer Commons, Susan G. Komen, like tons and tons of organizations have been vetted, that have information and people within their organization who that’s their job to empower patients with information, to pass it along.

Do not attempt to do this by yourself. And each and every time you go and encounter someone, explain to them exactly what your goals are, what you’re trying to get, whether it be a second opinion, or whether it’s really just trying to find out more about your disease, or finding out what those options are. It’s really important to try to get a big picture and not keep your focus so narrow until you move along down the path. And you really have become accustomed to the scientific information that you’re trying to get. So I would say, the short answer is find your tribe, those national organizations, those friends, those unique organizations, those niche organizations that are grassroots, like Karen’s Club, that really support the patient empowerment, and help patients make informed decisions about their cancer journey.

Arthur Brodsky, PhD

What were some of the most important scientific concepts, buzzwords, what not, that that were important for those conversations?

Karen Peterson

The most important buzzword when it came to the second research oncology consultation that I had, the buzzword was so you want to make an informed decision. And she literally wiped off her desk, like removed everything, and brought out a piece of paper. I think it was a napkin, I still have it somewhere. And she says, okay, and it was like a map. Here’s what you need to do. Because you’ve said to me, you don’t want to do anything emotional anymore, in order to be able to — I’m hearing you, right? We’re having a conversation, I hear you, in order to make an informed decision, these are things that you need to do. I think the most valuable aspect of that conversation was the fact that I was being introduced to the concept of making an informed decision based off of certain actions that I had to take and having an oncologist who was also an educator who was actually helping me figure it out, and helping me make sense of what was actually happening, or the goals that I wanted to attain.

We were actually having a back and forth conversation about it, and I didn’t feel like I didn’t understand. She was very patient. And like I said, she cleared off her desk, she got a piece of paper, and she was like, here’s where you are, this is where you want to go, these are the steps that you need to take. And so again, it was you need to have access to certain tools, and I think these certain tools will help you get where you need to go. And then she had the conversation with me about clinical trials and immunotherapy that could possibly be, down the road, an option for me. And I hadn’t heard about any of that before. So, it was very interesting, very eye opening.

Again, there’s no, there’s no guidebook to this and your emotions are raging. And I don’t know how I had the wherewithal to keep that composure, and to stay focused. But I will say this, to a patient who’s out there who might be going through similar circumstances, attack the problem, and not people, not someone who may have not listened to you or may have given you bad service or may not be available, continue to attack the issue at hand. And I think that was really important for me because I stayed focused, no matter what was happening, no matter how I was getting doors shut in my face, or people not calling me back or trials not being available, I continued to attack the problem.

Arthur Brodsky, PhD

What do you think the scientific community can do to improve trust among communities of color that are missing out on potentially valuable opportunities in immunotherapy clinical trials?

Karen Peterson

I think that’s a really good question. And I’m glad you asked that, because the scientific community is actually stepping up. If you had asked me that question in 2020, I’d have been like, oh my goodness! But we’re in 2023, and the scientific community, they’re doing so many exciting things. On December 29, 2022, President Biden signed into law the Consolidated Appropriations Act. And in that bill, the Food and Drug Administration has a bill, which includes several provisions intended to promote diversity in clinical trial enrollment, and encourage the growth of decentralized clinical trials and streamline clinical trials.

And I love that because this is groundbreaking. It’s like, okay,  there are laws in place that will protect us and encourage researchers to really think creatively about how they accrue patients of color into clinical trials. So, right there, when you start with laws, that’s really important. And then when you think about those beautiful initiatives — so in a couple of weeks, I’ll be at an Ivy League institution, and for the very first time they have teaching modules that will encourage doctoral students to think about cultural competency, and how that should be incorporated in their clinical trial practice and their approach to thinking about how do you engage with patients of color.

And I really think that’s important. Because again, I didn’t know that a lot of researchers have never had contact with patients. That’s like, oh, we’re doing clinical research, you’re trying to save lives, but you don’t really know what it is to be a part of a clinical trial from the patient perspective. And it’s really important because I’ve talked to patients, other patients, and when they hear about my experience on the trial and how I had a plethora of support, I heard from patients who said they haven’t had that support. So, getting those researchers to think about not just the drug itself, but everything that it entails to support a patient to be on the trial, those are conversations that I’m hearing that are — okay, we’re gonna have a steering committee, and we’re going to think about what you said, we’re going to come back to you and we’re going to show you how we’re using your feedback, and not just me, other patients in the community. We’re sitting on panels, and, you know, we’re on steering committees and what happened, these wonderful conversations, and now we’re seeing the fruits of those conversations come to light.

And I love that. And I love the fact that they think that the patient voice is valuable and we should be sitting on, what is it, IRB (institutional review boards)? All those things and taking into account what needs to be done in order to make sure that we’re supported in clinical trials and that we stay in clinical trials, whether we have these social determinants of health that may dissuade us from participating in a trial or something like mental health, having a social worker who can really support you do the isolation, or making sure you just have your lunch cover, like simple things like that. When I talk about how well I had it on the trial, a lot of patients I’ve talked to have not had the same advantages that I’ve had. My hope is that if you’re going to be on a trial, everybody has that same experience.

Arthur Brodsky, PhD

As far as patients who might be considering immunotherapy or just got diagnosed with cancer, what would you most want them to know about immunotherapy as well as enrolling in a clinical trial?

Karen Peterson

That advice that I give to patients that have just been newly diagnosed or who had been diagnosed with late stage disease, let’s say newly, that immunotherapy is a treatment option. It worked for me luckily, right? But there were certain parameters that I had to understand that made immunotherapy the right option for me, right? I think I want to be really clear about that. In order to understand whether or not immunotherapy is an option, you need to have a conversation with your doctor. And if the doctor doesn’t want to have a conversation with you, sit back and look to see — have a conversation with someone whether it be at CRI and have a patient navigator. Really have a conversation: Is this an option for me, and why is it an option for me? And be very clear about that, before you engage on moving further down the line with trying to attempt to have immunotherapy as a treatment option.

I think it’s really important. I really think it’s important for patients of color to understand the value of clinical research. I understand we’re skeptical, as we should be. I understand that we’re hurt, I understand that we remember very clearly, not even vaguely, but clearly what has happened in our history. But at the same time, I’m here because of cancer research. I’m not a manufactured story, this actually happened. And I understood very early on, I heard from people all the time, like how did you do it? Or what did you do? And I think, in my case, understanding the value of clinical research and the importance that was going to play in my life, grasping that and understanding that and having access to the researchers who made that very clear was very important.

So really understanding and not being afraid of opening yourself up really have those hard conversations with those medical professionals who were really engaged in doing it, and who have been doing it and have a record of doing it for quite some time. That’s what I really think is important, to not think that it’s not an option, that what happened to me is not obtainable. I just went and sought out the best care possible and I want everyone else to feel comfortable doing that too.

Arthur Brodsky, PhD

We’re so glad you did!

Karen Peterson

Thank you. I appreciate that.

Arthur Brodsky, PhD

Thank you for taking the time to speak with me today, Karen.

Karen Peterson

Thank you so much. I appreciate that. And thank you for taking the time to record me and link it up with the blog post. I hope it helps inspire patients and providers to do a better job when it comes to offering IO (immuno-oncology) therapy.