Lived Experience Matters: Why Patient Voices Improve Cancer Care and Research
When it comes to cancer, lived experience is not a side story. It is a source of expertise.
A recent Fred Hutchinson Cancer Center article highlights something Colon Cancer Stars has believed from the beginning: when patients and caregivers are meaningfully engaged, cancer care improves. Research becomes more relevant. Clinical trials become more accessible. Communication becomes clearer. Outcomes can change.
For nearly 15 years, Fred Hutch’s Patient and Family Engagement Program has helped ensure patient and family perspectives are heard and incorporated into clinical care. The program has also expanded to match patient advocates with researchers so studies and trials can be designed with real people in mind, from recruitment and retention to participant experience.
This is not performative. It is practical. It is powerful. And it is overdue.
Patient engagement is more than feedback.
Patient engagement is often misunderstood as satisfaction surveys or after-the-fact feedback. Fred Hutch’s model makes clear that the patient voice is most impactful when included early and consistently.
In the article, patient advisors support committees, focus groups, storytelling panels, and events. They have helped identify care gaps, improve clinic design, and flag issues that staff may not see. They act as an early warning system for the real experience of care.
That matters because many people do not feel confident speaking up in clinical settings, even when something feels off. Advocacy should not require a special personality type. Systems should be built to hear patients.
Why does this matter in colorectal cancer
Colorectal cancer advocacy is built on urgency. Too many people, especially younger people, experience delays in diagnosis, dismissals of symptoms, or long paths to the right specialist and the right testing.
Patient engagement helps change that. When patients are integrated into care improvement and research design, we see clearer education, better navigation, more equitable access, and more participant-friendly trials.
It also helps ensure that prevention and early detection stay at the center of the work.
Colon Cancer Stars is proud to see Anita featured.
We are especially grateful that this Fred Hutch article includes our own Program Director, Anita Mitchell Isler, Program Director and Co-Founder of Colon Cancer Stars, and a longtime national colorectal cancer patient advocate.
Anita is also a survivor of metastatic colorectal cancer. Her story is a reminder that expertise is not confined to journals and conference rooms. It is also found in waiting rooms, treatment plans, and the daily reality of navigating care.
Anita has spent years advocating for better screening, stronger biomarker testing, and more accessible clinical trials. She continues to speak up for patients who are being dismissed, delayed, or left to navigate a complex system alone.
What patient-centered care and research can look like
When patient voices are brought into the process early, we can build:
More participant-friendly clinical trials and prevention studies
Better patient education and navigation support
Stronger survivorship resources and transitions back to primary care
Faster access to the right specialists and the right testing
Communication that feels respectful, clear, and human
Systems that reduce inequities in access to screening and research
This is not just about comfort. It is about outcomes.
Our commitment
At Colon Cancer Stars, we will continue to elevate lived experience as a form of leadership. We will continue to advocate for earlier detection, better treatment pathways, and research that reflects real-world needs.
If you are a patient, survivor, caregiver, or advocate with a perspective you want to share, we want to hear from you. Your voice matters.
And if you have been putting off your screening, consider this your reminder: the most important win is the one that saves a life.
Read the original Fred Hutch story.
This blog post was inspired by the Fred Hutch News Service article: “Lived experience matters: patient engagement improves cancer care, research” (October 14, 2025, by Diane Mapes)