Thanks to a new research program led by the Terry Fox Research Institute’s Marathon of Hope Cancer Centres Network (MOHCCN), Dr. Marie-Pascale Pomey, researcher at the CHUM Research Centre, will receive $200,000 to address current gaps in precision oncology identified by cancer patients, survivors and caregivers.

With her team, she will create a bilingual, patient-driven online platform to help patients with rare cancers find reliable information and navigate the health care system.

A first of its kind

The MOHCCN’s program, known as 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.

A national advisory group made up of over 30 cancer patients, survivors and caregivers selected Dr. Pomey’s team and 9 other outstanding Canadian research teams to receive a total of $1.8 million over the next year to conduct their research. They will report all their findings back to the 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 fuelled Terry’s Marathon of Hope.”

Empowering patients with rare cancers

For patients with rare cancers like neuroendocrine tumours (NETs), finding reliable information and navigating the health care system can feel overwhelming. These tumours, which affect hormone-secreting glands, are challenging to diagnose and often poorly understood. This often leads to misinformation and inconsistent guidance, adding to the anxiety faced by patients and their families.

With her funding from the MOHCCN, Dr. Marie-Pascale Pomey plans to create a Personalized Patient Learning Pathway (PPLP).

This bilingual (French and English), patient-driven online platform will provide accessible and accurate information about NETs, personal stories and practical tools to help patients navigate their care.

“This research project was born out of the recognition by patients affected by NETs that they did not have access to quality information, and that they experienced a high degree of diagnostic uncertainty and stress. By listening to and documenting this situation, we co-constructed this research project between patients, clinicians and researchers, in response to a real patient need,” said Dr. Marie-Pascale Pomey.

“The whole project was discussed with dedicated patients who were keen to ensure that the project could be funded. We’re so pleased and grateful that other patients have recognized the importance of dealing with these rare diseases, and of enabling patients to be better equipped to deal with the complexities of care and life!”

The platform will also be available to health care professionals, to facilitate access to high-quality scientific information, raise their awareness of little-known NETs and enable them to direct patients toward reliable resources.

This project is in line with the Orientations prioritaires from the ministère de la Santé et des Services sociaux du Québec (2023-30) and the Politique québécoise pour les maladies rares, which aim to ensure that people with rare diseases have access to diagnosis, health care, treatment and quality information and that they can develop their capacity for self-management and partnership with their health care professionals.