Queen’s team part of groundbreaking new, patient-directed research program

News & Announcements | 17 Dec 2024

Doctors and researchers in Kingston as well as 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 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.

A team that includes researchers from Queen’s, University of Calgary, and Dalhousie University was granted $180,000 to research disparities in access to precision oncology drugs across Canada. Led by Dr. Bishal Gyawali (Queen’s Sinclair Cancer Research Institute, the group will examine how long it takes for new precision cancer drugs to reach patients in Canada. The project will examine the approval and reimbursement process, comparing timelines within Canada and against other high-income countries. The team aims to identify barriers preventing timely access to life-saving treatments.

“This (research) will help decision makers identify areas to intervene to ensure meaningful cancer drugs reach patients without delay, while simultaneously ensuring that marginal and toxic cancer drugs are filtered out by the system as it is supposed to,” says Dr. Gyawali. “This project will have direct impact on patients access to precision cancer drugs.”

Dr. Gyawali’s team includes Queen’s Drs. Chris Booth, Timothy Hanna, and Brooke Wilson), and Rachel Koven (Patient and Family Advisory Council of Kingston Health Sciences Centre).

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.

“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.”

Read a Q&A with Dr. Gyawali to learn more about the project.

Q: How would you describe your project to a lay audience?

A: We aim to study new precision oncology cancer drug approval and reimbursement process in Canada, including Health Canada approval, Canada’s Drug Agency’s recommendation and ultimately provincial adoption of drugs, and study the time taken at these various stages before the drug reaches patients. We then want to compare whether these timelines are comparable to other high-income countries, or comparable across different provinces in Canada. If there are delays, we aim to study different factors that may be associated with these delays.

Q: What do you hope to achieve by the end of the project?

A: By the end of the project, we aim to have a clear understanding of the following-

Do Canadians have delayed/limited access to precision oncology drugs compared to other high-income countries?
Do certain provinces in Canada have delayed/limited access to precision oncology drugs compared to other provinces?
If the answer to questions in a and b is yes, what are the reasons, and can we identify areas of intervention? For example, are the reasons legitimate (because the drug had marginal benefit, high toxicity, etc.) or are the reasons related to administrative and socio-economic factors?

Q: Why is this project important? How does it advance precision medicine for cancer? What potential impact could it have on patients?

A: Having a clearer understanding of the above questions will help us identify first, whether Canada is on par with other high-income nations and whether, patients in certain provinces even within Canada are systematically disadvantaged by having limited/delayed access to precision cancer drugs. Further, we will understand what factors are associated with these. This will help decision makers identify areas to intervene to ensure meaningful cancer drugs reach patients without delay, while simultaneously ensuring that marginal and toxic cancer drugs are filtered out by the system as it is supposed to. Thus, this project will have direct impact on patients access to precision cancer drugs.

Q: This funding opportunity was designed and adjudicated by members of the Network’s Patient Working Group, who are all cancer patients and survivors or caregivers and family members. Why do you think it’s important for the Network to fund this type of patient-centric research? Have you ever encountered a funding opportunity like this before?

A: This was a fantastic funding opportunity designed and adjudicated by the patient working group. At the end, cancer research’s primary goal is to improve patient outcomes. Improving patient outcomes in any way (survival, quality of life, experiences, satisfaction, etc.) is the ultimate endpoint of all cancer research. So, the best judge of patient-centric research should be patients, survivors, and caregivers. In addition, several research projects-like ours- that are not basic science research or clinical trials, do not have many other funding opportunities. Thus, I strongly believe that it is important for the Network to fund such patient-centric research. I have not encountered such funding opportunities before. So, thank you for creating this opportunity!

Project title: Disparities in access to precision oncology drugs across Canada

Research team: Dr. Bishal Gyawali (Queen’s University) – lead, Dr. Chris Booth (Queen’s University), Timothy Hanna (Queen’s University), and Brooke Wilson (Queen’s University), Dr. Safiya Karim (University of Calgary), Dr. Sharon Batt (Dalhousie University) and Rachel Koven (Patient and Family Advisory Council of Kingston Health Sciences Centre)

Funding: $180,000

Duration: Nov. 1, 2024 - Dec. 31, 2025

More about the Patient Voices in Research initiative

The Patient Voices in Research initiative was conceived by Terry Fox Research Institute’s Marathon of Hope Cancer Centres Network (the Network), 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.

“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 from Vaughan, Ontario, and a member of the Patient Working Group. “As we continue to improve prognosis by utilizing precision medicine, we would like more research that improves access and quality of life.”

“The patients did a spectacular job to ensure that the projects align with our goal of accelerating precision medicine for cancer patients, while still addressing real-world gaps in cancer care that they have experienced themselves,” explain Drs. André Veillette, executive director of the Network and Nicole Beauchemin, a retired cancer researcher based in Montreal and co-chair of our Patient Working Group.

The funded 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.

This feature is an edited version of a national release and Q&A published here by the Network.

Queen’s team part of groundbreaking new, patient-directed research program

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