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Implementing Person-Centered, Clinical, and Research Navigation in Rare Cancers: The Canadian Cholangiocarcinoma
Samar Attieh1,2, Leonard Angka2, Christine Lafontaine2
1Department of Surgery, Faculty of Medicine, University of Ottawa, Ottawa, ON K1H 8M5, Canada.
Abstract:
Person-centered navigation (PCN) in healthcare refers to a proactive collaboration among professionals, researchers, patients, and their families to guide individuals toward timely access to screening, treatment, follow-up, and psychosocial support. PCN-which includes professional, peer, and virtual guidance, is particularly crucial for rare cancers, where affected individuals face uncertainty, limited support, financial strain, and difficulties accessing relevant information, testing, and other services. The Canadian Cholangiocarcinoma Collaborative (C3) prioritizes PCN implementation to address these challenges in the context of Biliary Tract Cancers (BTCs). C3 uses a virtual PCN model and staffs a "C3 Research Navigator" who provides clinical and research navigation such as personalized guidance and support, facilitating access to molecular testing, clinical trials, and case reviews through national multidisciplinary rounds. C3 also supports a national network of BTC experts, a patient research registry, and advocacy activities. C3's implementation strategies include co-design, timely delivery of support, and optimal outcomes across its many initiatives. Future priorities include expanding the C3 network, enhancing user engagement, and further integrating its innovative approach into routine care.
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