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.
