Doctors and researchers in cancer clinics and labs across the country will spend the next year following “patients’ orders” rather than the other way around after receiving funds from a new patient-directed research program led by Terry Fox Research Institute’s Marathon of Hope Cancer Centres Network (the Network).
The program, known as the Patient Voices in Research initiative, will address current gaps in precision oncology identified by those closest to it: cancer patients, survivors and caregivers.
“People who have lived a cancer diagnosis or have accompanied a close family on their cancer journey know better than anyone what cancer care looks like today and what needs to improve,” says Darrell Fox, younger brother of Terry Fox and senior advisor at the Terry Fox Research Institute. “Like Terry, these cancer patients and survivors are driven by their own experiences to improve outcomes for future patients. In many ways, this program is a continuation of the ‘pay it forward’ drive that fueled Terry’s Marathon of Hope.”
The Patient Voices in Research initiative is believed to be the first of its kind in Canada to be fully designed and adjudicated by cancer patients for cancer patients. It was conceived by the Network’s Patient Working Group, a national advisory group made up of over 30 cancer patients, survivors and caregivers that helps steer the Network’s effort to rollout precision oncology for patients across Canada.
After designing, launching and reviewing the awards, the group selected 10 outstanding Canadian research teams as recipients of the award. These teams will receive a total of $1.8M over the next year to conduct their research and will report all their findings back to the patients.
“We have never come across an initiative that highlights patients, caregivers, and family members as the heartbeat of scientific research to this extent,” says Dr. Natasha Szuber, a Montreal hematologist who will lead one of the research teams being funded by this award. “The Network is a trailblazer in this regard, and we are honoured to be among those funded through this innovative program.”
While the original funding envelope was $1M, the quality of the research being proposed was so strong that Network leadership nearly doubled it.
The projects address disparities in access to groundbreaking treatments and clinical trials, explore lifestyle interventions to improve patient survival and quality of life, and seek to better understand the psychological impact of prolonged survival with aggressive cancers, amongst other topics. Many of the project are pan-Canadian in nature, highlighting the Network’s commitment to uniting cancer experts across the country to improve outcomes and quality of life for cancer patients.
“I am honoured to be part of the first cancer research grants in Canada to be designed, developed and judged solely by patients. The Patient Voices in Research Initiative showed the Network’s commitment to meaningful patient engagement and its willingness and faith in its patient partners. Being able to use our own experience and knowledge to choose research themes that will impact the lives of other cancer patients and having the opportunity to follow these projects from conception to finalization is very exciting, and something can hopefully be seen as a model for other organizations to adopt.” – Melissa Coombs, leukemia survivor, St. John’s, NL
“‘I am honoured to be part of an amazing group of patients and caregivers who had the wisdom to put together this research initiative. This team selected the priorities targeted by this unique initiative, carried out in-depth reviews of submitted proposals, and made the final recommendations for funding. Outcomes of these research projects will accelerate the understanding and adoption of genomics and AI-driven precision oncology in Canada.” – Denis Petitclerc, three-time cancer survivor, Sherbrooke, QC
“I am pleased to be a part of this announcement of the Patient Voices in Research grants. This first-of-its-kind program in Canada carries a significant funding envelope for research priorities that were defined by us, people with lived cancer experiences. As we continue to improve prognosis by utilizing precision medicine, we would like more research conducted that improves access and quality –of life. This PVR program is testament of MOHCCN’s commitment to a pan-Canadian approach to improving cancer outcomes.” – Yuan Lew, lung cancer patient, Vaughan, ON.
“Targeted therapy has been my lifeline, helping me survive an incredible 9.5 years with advanced lung cancer. Precision medicine is the future of cancer care, but not everyone has access to it in Canada. I’m excited to see how these projects help bring it to even more cancer patients.” – Christine Qiong Wu, lung cancer patient, Winnipeg, MB
About the Marathon of Hope Cancer Centres Network
The Marathon of Hope Cancer Centres Network is a bold collaboration inspired by Terry Fox that aims to improve outcomes and quality of life for cancer patients across Canada through the acceleration of precision medicine for cancer. Led by the Terry Fox Research Institute and the Terry Fox Foundation and made possible with support from the Government of Canada and partner institutions across the country, the Marathon of Hope Cancer Centres Network is beginning to transform cancer research and treatment by uniting Canadians under a single vision, “The Roadmap to Cure Cancer.” Today, the Network includes over 600 researchers, clinicians and patients and 38 institutional members, including academic and health care institutions from all 10 Canadian provinces. www.marathonofhopecancercentres.ca