Partnering With Patients Through Advocacy With Allison Rosen, MS

Oncology Data Advisor: Thanks so much for coming on today.

Allison Rosen, MS: Of course. Happy to be here.

Oncology Data Advisor: Would you like to introduce yourself and share a little bit about your story and how you became involved in patient advocacy?

Ms. Rosen: Sure. I'm a 10-year colorectal cancer survivor. Ten years ago, I was working in cancer research and living life to the fullest—working out, going out, having a great time. I started having interesting symptoms that I had no idea at the time were colorectal cancer. I was losing weight, I had fatigue. I thought that was because I was doing Zumba seven or so times a week and working out every day. I was tired, and I thought that was also from Zumba. Things started to change when my bowel habits changed. And when I would eat, I'd have abdominal pain.

All of this was unusual for me. I care about my health. I talked to my doctor, and she thought maybe I had a blockage of some sort, and she did an X-ray. It looked like there was potentially that blockage. She gave me something to drink so maybe it would clear me out. It didn't quite work, so I had a colonoscopy. I woke up from that colonoscopy and she said, "Well, you have some mass growing in your colon that is blocking anything from moving down your colon, but we're not quite sure what it is. We'll know in about two days. We don't think it's cancer, but we'll let you know." My research lab happened to be across the street, and two days later, she called me over to her office, and I was diagnosed with colorectal cancer.

That began my journey in cancer. Then I went through chemotherapy, radiation, chemotherapy again, and three surgeries, with lots of different complications. Throughout that process, the biggest thing for me was to connect with other patients. I wanted to meet other people like me who had gone through it. They really helped me throughout my whole journey, physically and mentally, to deal with what I was going through.

I was actually at an event with other advocates, and I was asked if I wanted to serve on an adolescent/young adult (AYA) advisory council at MD Anderson. I said, "Sure, why not?" That started my whole advocacy journey. They asked for my opinion and my voice, and I realized that I had a place to share what I had gone through—the good, the bad, and the ugly—and they listened. They made changes based on what I had to say. That was 10 years ago, and now my patient advocacy is a huge part of my life. It's really my passion, because I don't want anyone else to have to go through what I went through. I don't want anyone else to have to feel alone.

Colorectal cancer tends to be older people, and unfortunately, it's trending towards the younger population. When I was in the clinic, everyone thought my mom was the patient. I didn't really have anyone to talk to until I met someone else. Really, my goal in advocacy is to do everything and anything. If you ask who I volunteer with, it's everybody. I also made it a career. I moved from cancer research into health disparities, and now I'm working for the American Cancer Society for my full-time job.

Oncology Data Advisor: Thanks for sharing your story. You do a lot of really important work. What do you do with working with the American Cancer Society?

Ms. Rosen: I'm the Director of something called Project ECHO. Project ECHO is an online learning collaborative via Zoom where we bring worldwide experts together, and then we bring health care partners from all over the US together to learn from each other based on a specific topic for the cancer. It's access via Zoom to information and shared decision making. You discuss challenges that are going on within your system related to that specific topic. For example, you can talk about lung biomarkers, and you have experts in lung biomarker testing. Then you have people from all different institutions within the US that want to learn more about how to do lung biomarker testing accurately. And the people within the systems are presenting real-life cases about what their challenges are.

Everyone as a group, from all over the world, as well as our experts, gets to share best practices. Together we can help figure out how everyone can have access to the same resources, and also create a sense of community. An institution in Texas can bond over Zoom over the course of six or 12 months with an institution in Hawaii, or in Africa, or all over, so that they can hopefully learn something. And then they create partnerships outside after our ECHOES are over.

Oncology Data Advisor: That is really important work. You mentioned you work a lot with health care disparities. What are some of the directions you focus on with that? 

Ms. Rosen: With disparities, there are two focuses that I have: AYA disparities and colorectal cancer disparities. Within the AYA population, we're that weird. We're not pediatric, but we're not quite adult. With that, I try to spread awareness about the struggles that adolescents and young adults have—AYA stands for adolescent and young adults. There's financial toxicity, there's survivorship, there's fertility, there's sexual health, and there's mental health.

A lot of the different psychosocial and physical aspects of cancer that are specific for that age group, I help to spread awareness about that. That can be through social media, and that can be through organizations like Stupid Cancer or Teen Cancer America. I'm on an advisory board with Teen Cancer America. I help give my opinion and my viewpoint and create campaigns that might be helpful for other AYAs that feel alone. We're spreading awareness to make sure that programs can be developed for these specific topics related to AYAs.

I do this through social media. I do Facebook, Twitter, Instagram, but my favorite now is TikTok. I make videos telling my story and giving information about signs and symptoms, access to clinical trials, and all sorts of different disparities that exist, so that people know the information is there. And then I point them in the right direction of where to find, past me, what advocacy organizations and what institutions they can go to get more information. I might do a silly dance, but ultimately the goal is to give information to the people where they're at—and people are on social media. I do that for AYA, and I do it for colorectal. Any way I can get, I use my story not only to help people feel like they're not alone, but also to understand that there are unique needs and there are places they can go to get help.

Oncology Data Advisor: Definitely, that's great. Through social media, you can reach all the different demographics and the people who learn through different ways.

Ms. Rosen: Exactly, exactly.

Oncology Data Advisor: Since the theme of ASCO this year is "Partnering With Patients," from your perspective as a patient and a patient advocate, what advice would you have for clinicians regarding how they can best partner with and support their patients?

Ms. Rosen: I think the buzzword is shared decision making. That's number one on my list—making sure you're asking the patient about their needs. There might be a standard of care, but every patient is unique. Really talk to patients and make sure they understand about the research. Make sure you talk to them about their lifestyle beyond cancer, after the treatment is over. Hopefully everyone can be cured.By having that shared decision-making process, you get to know the patients, and you get to know their needs. You tell them their options, you discuss the options with them, and then you make a decision together. It's educational, but it's also informative as far as what the patient really needs outside of just chemo or radiation. What will work best for their lifestyle? They might have a very active lifestyle. They might not want radiation. They might want to have children. They might want to not have a certain type of drug that will prevent them from having children.

I really think that my whole goal has always been, ever since I was diagnosed, to bridge the gap between health care providers and patients and survivors. We work together, first of all, to make that decision one-on-one to make that decision as far as care. But then also, let us help you if you're doing research. Let us help you lend that patient voice to what you're doing from the very beginning, so that you can be the most successful. We want all of our health care partners and clinicians and oncologists to be as successful as possible. We want to help share what worked for us and what didn't work for us so we can help make them better health care providers.

Oncology Data Advisor: Absolutely. So, how has your experience here at ASCO been so far?

Ms. Rosen: Oh my gosh, it's been overwhelming here at ASCO. I absolutely love it. I love the amount of knowledge. I'm like a sponge, absorbing all the knowledge so that I can then take it back to the people who aren't able to be here. Talking to other people that care about the patient voice has been amazing. There's a lounge for us, which is really nice. I was up there earlier just to take a break from all the science and all the information, because it can get overwhelming at times. But this is where I feel like the forefront of all the new innovative research comes out. What's going on in oncology and colorectal and lung and prostate, it's here. We get to learn about it. We can see the wave of the future—what's going on in oncology, what will happen tomorrow, five, 10 years from now. It's overwhelming in the most amazing way.

Oncology Data Advisor: Absolutely. It's very exciting. Well, thank you so much for stopping by today. It's so interesting to hear about your story and your work, and it was great talking with you.

Ms. Rosen: Thank you so much for having me.

About Ms. Rosen

Allison Rosen, MS, is a colorectal cancer survivor and a patient advocate who uses her platform to educate, support, and represent the cancer community. She serves as the Director of the American Cancer Society's Project ECHO® (Extension for Community Health Outcomes), which aims to increase cancer prevention and early detection efforts and to improve the overall quality of cancer care. Ms. Rosen works as a patient advocate with numerous organizations, including Fight Colorectal Cancer, the National Coalition for Cancer Survivorship, the Colorectal Cancer Alliance, SWOG Cancer Research Network, and MD Anderson Cancer Center. She is passionate about bridging the gap between the health care system and the communities that it serves.

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Transcript edited for clarity. Any views expressed above are the speaker's own and do not necessarily reflect those of Oncology Data Advisor.