Setting up a personalized learning path for patients with neuroendocrine tumours

Empowering patients with rare cancers through better information and support

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 $200,000 in funding from the MOHCCN’s Patient Voices in Research Initiative, a Montreal-based team led by Dr. Marie-Pascale Pomey (CRCHUM) is addressing this challenge through the creation of a Personalized Patient Learning Pathway (PPLP). This bilingual, patient-driven online platform will provide accessible and accurate information about NETs, personal stories and practical tools to help patients navigate their care, while also equipping health-care providers with materials to enhance NET awareness and coordination. By closing gaps in knowledge and support, this project seeks to empower patients and improve care and outcomes for patients with NETs across Canada. 

Read our Q&A with the research team to learn more about the project.

How would you describe your project to a lay audience?

Rare cancers include neuroendocrine tumours (NETs) – tumours arising from various hormone-secreting glands in the body. These tumours are difficult to diagnose because they can present with a wide variety of physical signs that are not specific to cancerous tumours. What's more, patients and many health-care professionals know very little about these tumours, leading to diagnosis delays. Once diagnosed, it is difficult for patients to obtain information about their disease and their care trajectory. This creates major challenges for patients living with this disease.

The information available on the Internet is generally of poor quality. Another major issue is the presence of disparities between the information obtained from the Internet, that conveyed by the diagnosing physician (the family doctor or general surgeon) and that provided by the treatment team at the specialized centre. This can amplify the feelings of uncertainty and anxiety already felt by patients.

Therefore, the aim of this project is to support patients throughout their care trajectory through a Personalized Patient Learning Pathway (PPLP). The PPLP is co-constructed by patients with NETs and specialists in these diseases and will answer any questions patients may have. This pathway is accessible online in French and English, featuring comprehensible interactive content, testimonials from individuals afflicted with this disease and a chatbot to address questions. In addition, patients with this type of tumour will also be asked to support patients using the platform and help them make the most of the material available on it. The platform will also be available to health-care professionals, to facilitate access to quality information and enable them to direct patients toward reliable resources.

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

The creation of a Personalized Patient Learning Pathway (PPLP) can respond to several complex situations currently experienced by patients and health-care professionals and reduce inequalities in treatment for certain cancers.

First of all, for patients (and their families), it will give them access to high-quality information, thereby reducing the anxiety they feel about these rare and little-known diseases. It will also enable them to be accompanied by someone who has already been through this trajectory, and who is familiar with the platform and the resources available. This will assist patients in making informed decisions, engaging in the development of their treatment plan, and collaborating closely with their health-care professionals, thus regaining control over their circumstances.

For health-care professionals, in particular those working in primary care, it will also give them access to high-quality scientific information and raise their awareness of little-known NETs. It will also help them to better direct patients toward the most relevant cancer resources so that they can receive specialized follow-up care more rapidly from specialists in these rare tumours. 

As far as companions are concerned, they will complement and reinforce the clinical teams by bringing their experiential knowledge to patients, providing them with emotional, informational, educational and navigational support. 

Finally, for cancer departments, which are facing a significant increase in the number of cases being monitored, the development of digital tools such as PPLPs has the potential to equip patients to be more autonomous in managing their health problems, and thus be able to resolve situations without having to contact health-care services.

This project is in line with Quebec's Orientations prioritaires du Ministère de la Santé et des Services Sociaux  (priority orientations of the Ministry of Health and Social Services; 2023-30) and the Politique québécoise pour les maladies rares (Quebec policy on rare diseases), 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.

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

Patients affected by rare cancers, such as neuroendocrine tumours, encounter very challenging experiences and do not easily benefit from funding to improve their situation. This project helps to reduce this inequity and provides essential funding to improve the quality of life of those affected by NETs (patients and their families). 

The PPLP's digital format enables patients to find reliable information tailored to their needs, while benefiting from support from someone who has already experienced the disease, thus contributing to precision medicine in the field of cancer.

By being co-constructed by NET patients and their families, the PPLP-NET will ensure that, at every stage of its development, it responds to the needs of patients and their families. 

It will also help raise awareness of these cancers among the general public and health-care professionals, through strategies mobilizing social networks and more conventional media.

This project will also help to improve equity and access to high-quality, timely information for underserved populations such as rural populations, immigrants or people with low literacy skills across Canada and internationally.

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?

This project is unique in that it was conceived, written and supported by seven people who are themselves affected by a neuroendocrine tumour, either as patients or as relatives. From the outset of the project's development, all of these people have been part of the research team, first conducting an initial study to analyze the needs of patients affected by NETs. They were involved in data collection and analysis, and in writing the resulting articles.

They were then involved in all the preparatory meetings for the application submitted to the Network's Patient Working Group. They were involved not only in writing the proposed protocol but also in drawing up the budget and the knowledge transfer plan.

With this funding, these people will continue to be involved in all stages of the PPLP's implementation, in line with the Strategy for Patient-Oriented Research proposed in Canada. They will not only be involved in carrying out the research but also in accompanying patients as companions. They will also act as ambassadors for disseminating the results of this research to the general public and health-care professionals.

Dr. Pomey, the principal investigator of this project, has already led several projects with patient co-researchers who also participate in interventions co-created with patients. For example, she developed the PAROLE-Onco program, funded by the Canadian Institutes of Health Research, which introduces patients into cancer clinical teams. These accompanying patients, who have lived through cancer, complement the team's expertise with their experiential knowledge of the disease and the use of services. This project was co-directed by a patient co-principal investigator and five patient co-researchers. Then, to scale up PAROLE-Onco to all Quebec facilities, funding from Oncopole from the Fonds de recherche du Québec was obtained thanks to the participation of patients on the selection committee.