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Tuesday, December 17, 2024 (Halifax, N.S.) _ A team of doctors and researchers from Dalhousie University will spend the next year finding ways to improve the quality of life of long-term cancer patients after receiving funds from a new patient-directed research program led by Terry Fox Research Institute's Marathon of Hope Cancer Centres Network.

The program – the Patient Voices in Research initiative – was created to address current gaps in precision oncology identified by those closest to it: cancer patients, survivors and caregivers.

"Due to advances in precision therapies, more and more people are living longer with advanced cancers. This is excellent progress. Unfortunately, though, we have little information around how to best support and care for the growing population of Canadians," says Dr. Robin Urquhart, an associate professor in Dalhousie University's Department of Community Health and Epidemiology, and one of the researchers selected for the project.

Dr. Urquhart's team, including members from Memorial University of Newfoundland, received $115,000 for the research initiative. In partnership with cancer patients, the team will spend the next year co-designing supports that meet the distinct needs and circumstances of people who are living longer because of these new cancer therapies.

"We will first gather information from people with advanced cancer about their unique experiences and needs. We will use that information to co-design tools, resources and programs that personalize interventions and better support people living long-term with advanced cancer," she says.

The Patient Voices in Research initiative is believed to be the first of its kind in Canada to be fully designed 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.

"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."

The group selected 10 outstanding Canadian research teams as recipients of the award. These teams will receive a total of $1.8 million over the next year to conduct their research and will report all their findings back to the patients. While the original funding envelope was $1 million, the quality of the research being proposed was so strong that network leadership nearly doubled it.

“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," says Yuan Lew, a lung cancer patient in Vaughan, Ont. "As we continue to improve prognosis by utilizing precision medicine, we would like more research conducted that improves access and quality of life."

Until very recently, most people diagnosed with an advanced cancer faced very poor odds of long-term survival. However, this is no longer the case for many because of improvements in precision oncology, which allows doctors to better match cancer treatments to a person’s unique disease.

Very little research has explored the needs and experiences of people living long-term with an advanced cancer diagnosis, and virtually no research in Canada has focused on developing and testing interventions for this population despite the fact that people with advanced cancer may have very different needs and challenges than those whose treatment has finished, and whose cancer is considered cured.

"This research has the potential to directly impact patient’s lives and well-being as they live long-term with an uncertain prognosis," says Dr. Urquhart.

Media contact:

Alison Auld
Senior Research Reporter
Dalhousie University
Cell: 1-902-220-0491
Email: alison.auld@dal.ca