How a new program designed by patients, survivors and caregivers is paving the way for patient-centric research

*By members and co-chairs of the Marathon of Hope Cancer Centres Network Patient Working Group (PWG) 

It’s May of 2023. Over thirty cancer patients, survivors and caregivers from across the country are meeting for the first time after responding to a call to join the Marathon of Hope Cancer Centres Network’s Patient Working Group. The Zoom call we’re on is filled with nervous excitement.  We all want to learn more about the initiative we’ve just joined, but none of us knows what to expect... 

As the group’s co-chairs and Network staff start sharing their vision for the Patient Working Group, two things start to happen: our excitement starts to grow, and questions pop up in our heads. They say they want us to guide Network activities and help make precision medicine available to more cancer patients in Canada. They want us to help shape the research the Network funds—but can this really be true? If so, what will this look like?  

A virtual hand is raised, and the question is asked. Network staff answer vaguely. “We don’t know quite yet, but we’ll figure it out together,” they say.  

As the meeting comes to an end, there seems to be a lot of excitement about the road ahead, and a lot of uncertainty of what our journey will look like.  

Looking back at it, the only thing we can say with certainty is that none of us could have guessed things would turn out the way they did... 

An announcement a year and a half in the making 

Fast forward a year and a half, and those initial uncertainties are all but gone and our enthusiasm has only grown. Today, we’re honoured to be announcing that 10 research teams from across the country will be receiving a total of $1.8M from the Network as part of the Patient Voices in Research Initiative, a program that was fully designed, developed and adjudicated by us—the cancer patients, survivors and caregivers who are part of Network’s Patient Working Group. 

It's an exciting moment; the culmination of a year and a half of work that began during that first meeting and that took an important step forward six months later, when many of us gathered for the first time in Halifax, Nova Scotia for a Learning Exchange Event which we helped organize. 

During the event, we shared and listened to personal stories, delving into our cancer experiences and how precision medicine was shaping some of our treatments and improving our prognosis. As we engaged with researchers and clinicians from the Network, it became evident that there were unmet needs in precision oncology research that we could bring attention to, such as disparities in access to these lifesaving treatments. For us, this was not just about advancing science—it was about ensuring that the voices of those directly impacted by cancer were heard and addressed in the research process. 

Refining the research themes 

Over the next six months, as we continued working on other deliverables within the Network, work was happening behind the scenes. The group’s co-chairs and Network staff had heard our request to make precision oncology research more patient-centric and started working with leadership to secure funding for a new research program that took our needs into account.   

In spring of 2024, we learned that $1M had been secured for this purpose. We were all elated, but also rather overwhelmed by this immense opportunity and responsibility! We were going to be able to design this amazing program, pick the research themes to be addressed and eventually adjudicate the awards – this would be the first time in Canada, as far as we know, that an initiative of this magnitude would be co-driven by people with lived cancer experience from start to finish. Timelines were tight, but we powered ahead holding virtual sessions to identify areas where we felt the gaps in knowledge were most critical and where additional resources could have the most significant impact, while also remaining aligned with the goals of the Network. 

In May, many members of our group gathered once again in Toronto for the Terry Fox Research Institute’s 10th Scientific Meeting. We used this opportunity to finalize six research themes that went beyond the “lab-based” science already being funded by the Network to stimulate research that could lead to real, tangible improvements in cancer care across the country: 

1. Equity, access and disparities related to the continuum of precision medicine care 

2. Clinical trials access 

3. Patient involvement and engagement in precision oncology research 

4. Survivorship care plans and post-treatment resources 

5. Lifestyle interventions in precision oncology 

6. Rare cancers across the age spectrum 

Launching the initiative 

In June 2024, our hard work came to fruition with the launch of the Patient Voices in Research Initiative’s request for applications. This funding opportunity was shared widely with research teams across Canada, who were invited to submit proposals for projects that addressed one or more of the program themes. 

Cognizant of the importance of bringing together diverse expertise and perspectives, we encouraged applications with multidisciplinary representatives from across the country, including patient partners. We also requested that applicants present their research proposals in plain language. This was not only a crucial step in making sure that our group remained at the centre of the initiative throughout the review process, but also encouraged applicant teams to clearly communicate the real-world context and impacts of their research.  

The response was outstanding, proof that the gaps we had identified truly needed filling. In total, we received 38 applications – the most the Network has ever received in response to a single request for applications.  

The next step in the process was the review phase, and this is where we as PWG members truly felt the weight of our responsibility.  

Sixteen of us volunteered to participate in the review panel. We each spent several weeks assessing how each proposal aligned with the research themes, the needs of cancer patients and the goals of the Network. We then came together virtually to discuss the applications and score and rank them. After intense deliberation, and with valuable input from scientific advisors, we selected 10 teams whose projects stood out for their potential to drive change in precision oncology. It was a challenging process, in part because the applications were of such high quality – it was hard to choose the best! It was also extremely rewarding, as we were empowered to advocate in such a tangible way for the needs and values of individuals experiencing cancer. 

Awarding the grants 

That brings us to today: we’re thrilled to announce that 10 outstanding research teams will be funded through this initiative. In total, they will receive $1.8M over the next year – almost double what was originally allotted for the program – to perform their groundbreaking research. We believe this is a testament to the Network’s commitment to patient-centric research and are confident that these projects will generate valuable insights into cancer care and contribute to the advancement of precision medicine in Canada. 

Looking ahead, we are eager to see how these research teams will collaborate, engage with people with lived cancer experience, and build upon the work we’ve started. We’re also excited that the research teams will report back to the Patient Working Group with updates on their work and ideas for future research. Recognizing that addressing cancer requires a unified effort from researchers, clinicians, patients and other partners across Canada, this follow-up will ensure we continue to stay engaged throughout the research process.   

We are honoured and proud to be a part of this first-of-its kind program in Canada and to help shape all Network activities through our participation in leadership and scientific working groups. We hope that this initiative – and this truly integrative approach – will serve as a catalyst for future research and create new opportunities for people with lived cancer experience to be actively involved in the research process. The Patient Voices in Research Initiative is a testament to the power of collaboration and underscores the importance of ensuring that the perspectives of those with lived experiences remains central to the future of cancer research and care.