Implementing Person-Centered, Clinical, and Research Navigation in Rare Cancers: The Canadian Cholangiocarcinoma...

Area of Science:

• Oncology
• Healthcare Navigation
• Patient Support Systems

Background:

• Person-centered navigation (PCN) is a collaborative approach to guide patients through healthcare.
• PCN is vital for rare cancers due to challenges like uncertainty, limited support, and access difficulties.
• Biliary Tract Cancers (BTCs) represent a group of rare cancers requiring specialized navigation.

Purpose of the Study:

• To implement and evaluate a virtual Person-centered Navigation (PCN) model for Biliary Tract Cancers (BTCs).
• To address the unique challenges faced by rare cancer patients, including access to information, testing, and psychosocial support.
• To facilitate patient access to clinical trials, molecular testing, and expert consultations.

Main Methods:

• The Canadian Cholangiocarcinoma Collaborative (C3) employs a virtual PCN model.
• A dedicated "C3 Research Navigator" provides personalized guidance, support, and facilitates access to services.
• Implementation strategies include co-design, timely support delivery, and leveraging a national network of BTC experts.

Main Results:

• The C3 virtual PCN model facilitates access to molecular testing, clinical trials, and multidisciplinary case reviews.
• Established a national network of BTC experts and a patient research registry.
• Initiated advocacy activities to support the BTC patient community.

Conclusions:

• The virtual PCN model implemented by C3 effectively addresses challenges in rare cancer care, specifically for BTCs.
• Future priorities include network expansion, enhanced user engagement, and integration into routine clinical practice.
• PCN is a critical component for improving outcomes and patient experience in rare cancer management.