Published by Fight Colorectal Cancer (Fight CRC)

When you hear “clinical trial,” you might picture endless paperwork or doctors tracking tumor scans. But here’s what you might not know: patients—people just like you—are also in the room where decisions get made.

Through Fight CRC’s Research Advocacy Training & Support (RATS) program, survivors and caregivers are helping shape how studies are designed, who gets to join, and what outcomes really matter.

This is your behind-the-scenes look at how patient advocates are changing research—and why it matters for every colorectal cancer (CRC) patient.

If you’re newly diagnosed, clinical trials might feel overwhelming. But here’s why patient advocacy makes a difference:

• More Options. Advocates fight to make eligibility rules fairer, so more patients qualify.
• Better Questions. Advocates push researchers to measure what matters—like fatigue, pain, and daily life—not just tumor shrinkage.
• Fewer Barriers. Advocates flag real-world challenges like travel costs, early appointments, or financial stress.

Bottom line: trials designed with patients in mind are more realistic, humane, and doable.

Fight CRC-trained advocates serve in places you might not expect:

• IRBs (Institutional Review Boards): reviewing protocols to protect patients.
• Federal panels: advising groups like FDA, PCORI, DoD PRCRP, and NCI.
• Professional societies: influencing research priorities at ASCO and SWOG.

And they ask the questions you might ask yourself:

• “Can families afford this?”
• “Does this schedule actually work for patients?”
• “Are we measuring both living longer and living better?”

So what does all this mean in real life? Thanks to patient advocates, trials are starting to look different, and better, for people with colorectal cancer:

• More chances to participate. In the past, strict rules kept many patients out of trials. Advocates have pushed for broader criteria, so more people actually qualify.
• Measuring what life feels like. Trials used to focus only on tumor size or survival. Now, many also track side effects like fatigue, pain, or how well you can do everyday activities—because those things matter too.
• Support for the hidden costs. Trials are beginning to recognize that travel, hotel stays, and missed work add up. Advocates are raising these issues so more studies build in help, like financial counseling or travel assistance.

In other words: research isn’t just about the science anymore, it’s about making trials more doable, more humane, and more focused on what patients really need.

Research backs this up:

• Understanding the Perceived Impact and Value of Research Advocacy Initiatives for Colorectal Cancer (2020 study)
• The Current Landscape of Research Advocacy and Education for Patients with Colorectal Cancer (2022 review)

As Fight CRC advocate Matthew DeAngelis shared:

“One thing I am excited to learn as a research advocate is how patient-advocates can influence the design of cutting-edge, practical, patient-centered clinical trials.”

Patients are no longer just trial participants. They’re leaders, partners, and innovators.

• Learn about RATS. See how Fight CRC trains advocates to make an impact.
• Ask your care team. Try: “Does this cancer center include patients on its research boards?”
• Raise your voice. Every question you ask shapes research for the better.

At Fight CRC, we believe patients aren’t just part of the story, they’re helping write it.