Research
Health Sciences faculty win Terry Fox grants funding patient-led cancer research
Two Faculty of Health Sciences researchers at Simon Fraser University will partner with cancer patients, caregivers, family members and health care service providers to pursue projects in precision oncology, thanks to the Terry Fox Research Institute.
The Patient Voices in Research initiative – designed, led, and adjudicated by cancer patients and survivors – is funding 10 team research projects across Canada, including the two being led by assistant professor of professional practice, Helen McTaggart-Cowan, and adjunct professor Samantha Pollard. The 10 investigative teams are receiving a total of $1.8 million from the TFRI’s Marathon of Hope Cancer Centres Network to conduct their research.
McTaggart-Cowan and Pollard will each lead a pan-Canadian team that is focusing on advancing precision oncology, which uses a patient’s genomic (genetic) information to apply tailored cancer prevention and treatment approaches, with the goal of improving patient quality and length of life.
McTaggart-Cowan is leading a project through BC Cancer exploring inequities in access to life-saving genetic testing for patients with advanced ovarian cancer. Her team received $183,500 to learn more about the perspectives of patients with advanced ovarian cancer, their families and health care providers on the use of homologous recombination deficiency (HRD) testing, which enables patients to learn how to effectively manage their disease by tailoring treatments to enhance health outcomes and quality of life in patients.
“Currently, patients pay for this test out-of-pocket,” says McTaggart-Cowan. “By the end of the project, we aim to understand stakeholders’ perspectives on HRD testing, particularly how patients, families, and healthcare providers view its accessibility and usefulness. Our research findings will add to the evidence that improved access to HRD testing is needed and that increased awareness is essential to equip stakeholders with the necessary information and tools for informed decision-making.”
Pollard is leading the Patient-driven Cancer Trials (PACT) project through the Faculty of Health Sciences.
Her team received $239,000 to create a more accessible and inclusive clinical trial framework for precision oncology that integrates patient and caregiver perspectives, needs, and values.
One of the biggest challenges in this field is that, “Precision medicine can only advance meaningfully if the outcomes generated are beneficial to patients,” says Pollard.
She points out that current models of clinical trials can be costly for patients in terms of their time and energy, and early-stage trials might not generate outcomes that patients and their families consider meaningful.
“Through the PACT project, alongside patient partners, we will identify and prioritize features of clinical trial designs that align with patient expectations and motivations for participation. This work will help ensure that the design and conduct of clinical trials for precision oncology directly respond to the needs and preferences of those asked to participate.”
Both McTaggart-Cowan and Pollard will be collaborating with the network’s Patient Working Group, a national advisory group made up of more than 30 cancer patients, survivors and caregivers. By engaging the working group in the selection and final reporting of the precision oncology research projects, TFRI is embedding patient leadership and participation into the Patient Voices in Research initiative from start to finish.
“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 TFRI. “Like Terry, these cancer patients and survivors are driven by their own experiences to improve outcomes for future patients.”
Rosilene Kraft, a breast cancer patient in Coquitlam, B.C., remarked that the Patient Voices in Research initiative is truly unique in Canada.
“I have participated in other initiatives like this, but this project is the first I’ve seen where the patients set the themes of the competition based on their priorities and then were the sole members of a panel reviewing and rating the research proposals presented,” she says. “The competition attracted applications of exceptional quality. I feel very proud of having been part of such an empowering initiative for patients.”
McTaggart-Cowan praised the Patient Voices in Research initiative, saying it was the first time that she has encountered a funding opportunity solely conceptualized and reviewed by patients.
“If, as researchers, we seek to design studies and recruit patient participants to help us generate meaningful evidence, we first need to better understand how to conduct research in a manner that is acceptable, appropriate, and valued by those asked to participate,” Pollard adds.