How patient partnership helped shape Phase 1 of the Marathon of Hope Cancer Centres Network

By the members of the Patient Working Group 

Over the last few years, a notable shift has started to take hold of cancer research. Where historically, research has been something done for patients, it is increasingly being done with them. The difference may seem subtle, but it has the power to transform what research is done, how it is shaped, and ultimately, how it translates into better care. 

Recognizing this shift, in 2023, the Marathon of Hope Cancer Centres Network invited people with living/lived cancer experience to join the growing number of researchers, clinicians, and administrators who were starting to work together to bring precision oncology to more Canadians. The question behind the invitation was simple: if the goal was to accelerate research that improved outcomes and quality of life for patients, shouldn't they help shape it? 

More than 30 of us answered that first call, and what happened since has been truly astonishing. 

During Phase 1 of the Network, we helped influence research priorities, funding decisions, governance, communications, and patient engagement. Along the way, we built friendships, strengthened the patient voice in cancer research, and helped demonstrate that incorporating living and lived experience into research is not simply valuable—it is essential. 

Perhaps our greatest lesson was this: scientific expertise and patient expertise are not competing perspectives. They are complementary ones. 

Researchers understand cancer biology. Patients understand what it means to hear a diagnosis, navigate treatment, cope with uncertainty, learn to advocate for our own care, and manage life with and after cancer. Both forms of knowledge are needed if we want research to answer the questions that matter most. 

The need to unite and elevate these complementary perspectives defines our role in the Network and was the motor that propelled one of our proudest accomplishments during Phase 1: the creation of the Patient Voices in Research Initiative, the first national precision oncology research funding program designed, led, and adjudicated entirely by cancer patients, survivors, and caregivers. 

For many of us, coming up with research themes, reviewing proposals, and determining which projects deserved funding was unlike anything we had experienced before. It challenged long-held assumptions about who belongs in research decision-making, and more importantly, led to funding impactful research that is addressing key gaps in precision oncology. This was especially evident when the teams funded through this program shared results of their projects with us—and the wider public—last spring in virtual seminars co-chaired by members of our group: it was incredibly energizing to see just how much they achieved in only one short year. 

The experience also confirmed what many researchers across the Network had already begun to recognize: patient perspectives strengthen scientific excellence. By asking different questions—about quality of life, accessibility, implementation, and real-world impact—we are helping ensure that promising science remains connected to the people it is intended to serve. 

But meaningful patient engagement extends far beyond research funding. 

Throughout Phase 1, members of our group participated in advisory committees, working groups, and conferences, helping researchers better understand the realities of living with cancer. We helped draft guidelines and policies, co-chaired conference sessions and virtual seminars, participated in leadership discussions, and asked essential questions. We sat at decision tables and shared the stage with other Network members as true partners and peers, not as tokens. 

We also helped develop patient resources that make precision oncology more understandable and accessible. We hosted our first two Pan-Canadian Patient Forums—one in English and one in French—to bring this message to more people. We interviewed Network experts about their areas of research, helping bridge the gap that can exist between the scientific community and the interested public. We helped trainees hone their presentation skills. We shared our personal stories at Network events and in communities across Canada, helping explain why genomic testing, personalized treatment, and equitable access matter not just as scientific concepts, but as opportunities to improve and save lives. 

Perhaps the most meaningful outcome of the last three years, however, cannot be measured in reports or publications. 

It is the community we built, and the bonds we formed. 

We came from regions across Canada, representing different cancers, different backgrounds, and different life experiences, and united around a shared purpose. Some of us are caretakers for loved ones with cancer, some of us are cancer survivors, some of us are in treatment as we speak, and some of us know we won’t be cured of our advanced disease.  

Many of us arrived wondering whether we had anything meaningful to contribute. We leave Phase 1 knowing we did. 

We also leave Phase 1 having lost treasured members of our group, underscoring the urgent need to continue the marathon against cancer that Terry Fox started more than 40 years ago. 

The Patient Working Group became a place where people felt heard, respected, and empowered. We developed new skills, formed lasting friendships, and discovered that our experiences—however different—could help shape a national research effort. More importantly, we demonstrated that people with living and lived cancer experience can contribute meaningfully at every level of research, from strategic planning to funding decisions and from communications to shaping scientific initiatives. 

That partnership did not happen by accident. It happened because the Marathon of Hope Cancer Centres Network made a deliberate commitment to treat patients as equal collaborators in the Network. We were invited into conversations, listened to with respect, and trusted to contribute in meaningful ways. 

This culture should not be the exception. It should become the expectation. 

As the Network enters Phase 2, our work is far from finished. Too many Canadians still face barriers to accessing precision oncology. Too many patients remain excluded from conversations that affect their own care. If precision medicine is to fulfil its promise of delivering patient-centric care, patient partnership cannot be viewed as an optional addition or a box to check. It must remain central to how research and care are conducted. 

Three years ago, we accepted an invitation to help build something new. 

Today, we are proud not only of what we helped build, but of what it represents: proof that when patients, researchers, clinicians and administrators work as genuine partners, cancer research becomes stronger, more relevant, and more likely to improve lives. 

Phase 1 set the stage for how this can be done. In Phase 2, we will work even closer with members across the Marathon of Hope Cancer Centres Network to continue ensuring that the Network focuses on research and solutions that put patients first and accelerate the promise of precision oncology for all Canadians, no matter who they are or where they live. 

Because finishing Terry Fox's marathon against cancer will take all of us. And patients won't be waiting at the finish line—we’ll be there to help lead the way.