A pan-Canadian research team led by Dr. Helen McTaggart-Cowan, a BC Cancer scientist, will receive $183,500 through a new Patient Voices in Research Initiative from the Terry Fox Research Institute’s Marathon of Hope Cancer Centres Network (the Network) to examine barriers to accessing homologous recombination deficiency (HRD) testing for patients with advanced ovarian cancer.
Through interviews with patients, families and healthcare providers, the project will investigate the knowledge, attitudes and experiences surrounding HRD testing. The findings aim to highlight the need for equitable access to this critical test, which tailors treatment based on a patient’s genetic profile, and to support advocacy for publicly funded testing in Canada.
“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,” says Dr. McTaggart-Cowan. “Our research findings will add to existing 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.”
Through the use of interviews, this project will explore the knowledge, attitudes and experiences of patients and healthcare providers regarding the HRD test. Findings from this work can help improve care for patients with ovarian cancer and influence future healthcare funding policies.
“These findings will support the co-development of a larger research agenda with our team and other stakeholders to advocate for publicly funded HRD testing, ultimately aiming to improve care and outcomes for patients with advanced ovarian cancer,” added Dr. McTaggart-Cowan.
This work will be funded through a new program, called the Patient Voices in Research initiative, which 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.
“This is the first time I have encountered a funding opportunity solely conceptualized and reviewed by patients,” says Dr. McTaggart-Cowan. “This opportunity endeavours that research, healthcare and policy priorities align with the perspectives and real-world needs of the patients. The input and engagement of patients and caregivers ensure that research is relevant and meaningful to the population of interest.”
Read more about the Patient Voices in Research initiative on the Terry Fox Research Institute’s Marathon of Hope Cancer Centres Network website.