Welcome to Advocacy in Action, our monthly blog where Fight Colorectal Cancer’s Advocacy Team discusses what’s happening in the advocacy world.

In May, the American Association for Cancer Research (AACR) initiated and supported National Cancer Research Month to highlight the importance of lifesaving research to the millions of people around the world affected by cancer.

We’ve spoken with Phuong Gallagher, Research Advocate Program Manager of Fight CRC's Research Advocates Training and Support (RATS) Program, to explore the impact of RATS within the colorectal cancer community, and explain how you can become a member of the team that informs the scientific community.

In addition to being the RATS program manager, Phuong is the President of the Colon Club, served as a panelist at the 2023  White House Cancer Moonshot Colorectal Cancer Forum and is a stage IV and 16-year colorectal cancer survivor.

Phuong’s Story

Phuong’s story, which led to her research advocacy, began 16 years ago. She started having what she now knows are classic signs and symptoms of colorectal cancer. But she didn’t know that at the time. She knew something wasn’t right and asked her primary doctor for a colonoscopy, but he told her, “You’re too young for cancer.”

Phuong was raised in a culture where children were taught to respect and not question authority, so she explained away her symptoms, resulting in a 1.5-year delay in diagnosis.

For her first 10 years of treatment, Phuong received standard of care for that time (approximately 2007-2017): chemo, radiation, surgery, FOLFOX, and FOLFIRI. Both of Phuong’s first two lines of treatment (FOLFOX and FOLFIRI) failed her. Her next option, regorafenib, had just been FDA-approved for late-stage cancer. Little did Phuong know this would lead to her becoming a research advocate.

Learning to Advocate

After Phuong’s first recurrence, she discovered The Colon Club. In the beginning, Phuong lurked on the sidelines, reading through information, and watching others share their experiences.

Then, Phuong started asking questions and receiving responses. For the first time in her life, she was encouraged to ask peers and doctors questions about her treatment and health care.

These very questions stimulated conversations with her doctors that changed the trajectory of her health care.Once Phuong learned to ask questions, she also learned how to advocate for herself. When her doctor spoke with her about regorafenib (Stivarga^®), she told him “no” because she felt it was not the right option for her at the time. It was the first time she had ever said “no” to anything her treatment team had suggested. Her doctor was stunned that Phuong knew about regorafenib, as findings had only come out in the journals a week before.

It was empowering.

Phuong not only found her confidence; she also found her voice.

Looking back, Phuong sees this experience as the first spark of interest and realization of how important research advocacy is.

At that time – 14 years ago – there were no other drug options for Phuong. Clinical trials weren’t discussed or available the way they are today. With further discussions, Phuong and her medical team settled on a novel, but radical approach for the time – surgical and radiological interventions without chemotherapy.

The retirement of Phuong’s oncologist of 10 years was terrifying for her, but it forced a change that was exactly what she needed. Phuong’s new oncologist was not only a clinician and researcher, but a collaborative partner in her care.

Cementing Her Work in Research Advocacy

Eventually, as genetic testing and biomarker testing became more widespread, Phuong became more aware of what her biomarkers meant for her treatment and care, which cemented her involvement in research advocacy.

Now, she wanted to use her patient experience to support the research community. In one of her first experiences with a researcher, Phuong received a template to sign for her patient letter in support of the researcher’s grant. But it didn’t sound or feel like her story.

Learning from her advocacy experience, Phuong pushed back to make the letter represent her voice, experiences, and story. She surprised the researcher who thought patients didn’t want to be bothered with “something more to do,” but happily accepted Phuong’s letter tailored to her life and experience. The reviewing committee noted that the letter was a testament to the study’s unmistakable level of patient support and was a strong contributing factor to her becoming a recipient of the research grant.

Today, Phuong whole-heartedly believes that weaving storytelling and advocacy is important for patients with colorectal cancer when working with researchers. 

She now is directly influencing research – on so many levels – from the beginning to the very end of research studies. The number of patient research advocates is also increasing, which delights Phuong because she knows how important the patient voice is.

Becoming the Fight CRC Research Manager was a natural evolution for her life and work: personally and professionally.

“This is my world. These are my people. It has been so tremendous to oversee the program and be part of its growth and expansion because researchers are starting to gain some perspective as to the real benefits and impacts of having the patient voice guide in the research they are doing. But there is not enough of that yet.”

–Phuong Gallagher

Phuong outlines a comparison with breast cancer and how there is formalized, standardized training for breast cancer advocates, and that grants almost always require that they have patient advocate participation. Beyond just being named, they need to show how these advocates are going to be active participants.

Phuong stresses this is important because while this standardized training does not yet exist within the colorectal cancer space, it is something to work toward as she and the Fight CRC RATS members work to expand their program.

Breaking Down the Biggest Myths

Phuong says the biggest myths about the Fight CRC RATS, and research advocacy in general, is people think they are exclusively scientifically minded. This is false.

She says patients don’t have to be science majors and explains that Fight CRC helps to build a foundation in approximately a six-month course to support people as they learn. Some things potential RATS participants will learn are:  

• Medical terminology so they are comfortable talking and listening.
• How to interact with researchers and scientists successfully.
• What a poster is and how to navigate through medical components.

Phuong also says that once people understand the basics of research advocacy, there are many paths they can pursue, such as:

1. Sharing personal experience:

• When researchers are setting up a study, helping them realize even minor burden shifts away from the patient can greatly impact recruitment.
• Reading through patient-facing material to make sure the language is not offensive or how the patient may not normally speak, or if the material isn’t patient friendly.

2. Clinical Trials Finder:

• Patients can become curators for Fight CRC’s Clinical Trial Finder.

3. Whatever your area of interest:

• Patients can think outside the box about ways to become involved. They can consider areas where they were most impacted and share their experience so that others can learn from their challenges. For example, diversity, equity, and inclusion (DEI), mental health, or nutrition.

The ultimate goal for RATS members is to improve the patient experience through research for those who come after them rather than struggle in the same ways on the same road. 

Why Research Advocacy Is Close to Her Heart

National Cancer Research Month is significant to Phuong because it’s important for her to give back. She has seen a tremendous number of discoveries and advancements in treatment in the last 16 years, and research advocacy is her way of helping the people coming after her to benefit from what she has learned.  Throughout her cancer journey, Phuong has faced challenges and setbacks, but her experiences have given her the ability to inform, educate, help, and guide people who are diagnosed in the great hopes that their experiences are better than hers were. Phuong hopes to see continued advancement towards better treatment options for all patients.

Become a Research Advocacy Training and Support (RATS) Member

For Fight CRC’s Research Advocacy Training and Support program, Phuong emphatically reinforced that you don’t have to be a scientist or have a biology background to become a member. All you need is your story and a willingness to learn and apply what you learn.

The application is to gauge and align interests.

For More Information on Research Advocacy

• Fight CRC RATS
• Colon Talk
• American Association for Cancer Research (AACR)

Past Advocacy in Action Blog Posts

• March 2023: White House Cancer Moonshot Colorectal Cancer Forum Recap
• March 2023: Call-on Congress and Colorectal Cancer Awareness Month
• February 2023: Gear Up for Call-on Congress 2023
• December 2022: Call-on Congress Is Colorectal Cancer Advocacy
• November 2022: Meet the Advocacy Team
•