The Patient Working Group’s Year in Review: What we accomplished from a year of working together

By members of the Marathon of Hope Cancer Centres Network Patient Working Group (PWG), Drs. Nicole Beauchemin and Nathalie Lamarche-Vane, PWG co-chairs, and Jessie Micholuk, Network program manager

When Terry Fox set out on his Marathon of Hope in 1980, he united Canadians under a dream of a world without cancer. For over forty years, this dream has stayed alive thanks to the tireless work of patients, donors, volunteers, researchers and clinicians across the country, who have all done their part to help to improve how we prevent, diagnose and treat cancers.  

Today, this diverse group of people are working together like never before through the Marathon of Hope Cancer Centres Network, which is creating the Team Canada of Cancer Research to help improve outcomes and quality of life of cancer patients by accelerating precision medicine for cancer. 

People with lived experience – those who have received a cancer diagnosis as well as those who have cared for loved ones with cancer – are an integral part of this team. As patients, survivors, caregivers, and family members, we are, after all, the ones who can best speak to what it’s like to live with cancer. We know, better than anyone else, that we still have a lot of work to do to make sure that cancer research is guided by the needs and values of those who have or are experiencing it. 

This is why, one year ago, so many of us responded to the Network’s call to join its Patient Working Group (PWG), with a mandate to centre patient voices within Network activities. It has been an incredible year and looking back, it is thrilling to see how much we have achieved in such a short time! 

From the start, enthusiasm was high: more than 30 people with diverse backgrounds and experiences joined the group from nine provinces. The interest was so high, in fact, that we decided to create four focus groups to help us work efficiently and expand the impact of our efforts. Guided by our extraordinary co-chairs Drs. Nicole Beauchemin and Nathalie Lamarche-Vane and our attentive Network Program Manager Jessie Micholuk, together we came up with four areas of interest: 

A. Communicating patient journeys and experiences 

B. Exploring themes for events and workshops  

C. Building a nationwide patient/public education campaign on precision oncology 

D. Collaborating with other Network working groups 

We didn't waste any time getting to work and spent the first few months producing mandates, deliverables and workplans to keep the groups productive and on track. In November 2023, just a short six months after our inaugural meeting, many of us met in person for the first time at our first Learning Exchange Event held in Halifax, Nova Scotia, with even more members joining virtually. The packed agenda, which Focus Group B helped develop, included educational presentations on various aspects of precision oncology, round-table discussions between researchers, oncologists, and members of our group, and personal stories from PWG members. Collectively, we concluded the event with a greater understanding of how the Network is trying to accelerate precision medicine for cancer across Canada, and the critical role we can play in making this a reality. The meeting also helped establish priorities on how we wanted to engage with the Network moving forward, which have helped guide our work since. 

This was, of course, just the beginning. Since then, we have become even more plugged into Network operations. A patient representative now sits on the Network Council, while the PWG co-chairs are also part of the Network’s Steering Committee. Members of our group are also co-chairing the Network's seminar series events, which feature ongoing research happening in centres across the country.  

To date, six members have shared their personal stories with a broader Network audience via a newly created “Network Voices” section of the Network’s website (an initiative led by Focus Group A). We strongly believe in the value of bringing personal perspectives into research spaces, and not only have we found these experiences personally enriching but we have also already noticed a difference in how Network researchers share their work with diverse audiences that include patient partners. This has also fed into lively discussions across all focus groups regarding how best to support Network members in making their research accessible in plain language, leading to work that we are excited to move forward. 

So far, members of Focus Group D have also worked closely with two other Network working groups – the Return of Results subgroup and the Health Technology Assessment working group – to share our perspectives and help shape these groups’ activities. We already have more collaborations on the horizon, and we look forward to continuously centring patient voices to guide ongoing efforts! 

Looking back at our accomplishments in our first year only makes us more excited for the next one and everything it will bring! We have so much to look forward to in the next year, starting with the Terry Fox Research Institute's 10th Scientific Meeting in Toronto this month where members of our group will take the stage alongside Network researchers and clinicians to share our stories and perspectives and to celebrate our group's and the wider Network's exciting accomplishments. Many exciting things are coming: from educational videos and web content that will bring valuable information to patients and caregivers across the country (spearheaded by Focus Group C), to an unprecedented patient-led request for applications for research projects, to a bigger role for PWG members in Network project reviews. As the Network continues to grow, we couldn’t be more excited to grow our role within this initiative! 

Equally as important, it has been a pleasure coming together with the passionate, kind, and hardworking individuals who make up our Patient Working Group. Together, and with the support of the broader Network, we know we can make a difference in the lives of Canadian cancer patients now and into the future. We look forward to continuing our work advancing precision oncology so that patients like us and those who will come after us have the best possible opportunities for effective treatments that support our quality of life. We are honoured to be doing our part to keep Terry's spirit alive and to make his dream of a world without cancer a reality for everyone.