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在罕见癌症中实施以患者为中心的临床和研究导航:加拿大胆管癌协作组(C3)

Implementing Person-Centered, Clinical, and Research Navigation in Rare Cancers: The Canadian Cholangiocarcinoma Collaborative (C3).

作者信息

Attieh Samar, Angka Leonard, Lafontaine Christine, Mitchell Cynthia, Carignan Julie, Ilkow Carolina, Turcotte Simon, Goodwin Rachel, Auer Rebecca C, Loiselle Carmen G

机构信息

Department of Surgery, Faculty of Medicine, University of Ottawa, Ottawa, ON K1H 8M5, Canada.

Cancer Therapeutics Program, Ottawa Hospital Research Institute, Ottawa, ON K1H 8L6, Canada.

出版信息

Curr Oncol. 2025 Aug 1;32(8):436. doi: 10.3390/curroncol32080436.

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.

摘要

医疗保健中的以患者为中心的导航(PCN)是指专业人员、研究人员、患者及其家属之间的积极协作,以引导个人及时获得筛查、治疗、随访和心理社会支持。PCN包括专业指导、同伴指导和虚拟指导,对于罕见癌症尤为关键,因为受影响的个体面临不确定性、支持有限、经济压力以及获取相关信息、检测和其他服务的困难。加拿大胆管癌协作组(C3)将实施PCN作为优先事项,以应对胆管癌(BTC)背景下的这些挑战。C3采用虚拟PCN模型,并配备了一名“C3研究导航员”,该导航员提供临床和研究导航,如个性化指导和支持,通过全国多学科会诊促进分子检测、临床试验和病例审查。C3还支持一个全国性的BTC专家网络、一个患者研究登记处和宣传活动。C3的实施策略包括共同设计、及时提供支持以及在其众多举措中实现最佳结果。未来的优先事项包括扩大C3网络、提高用户参与度以及将其创新方法进一步融入常规护理。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/12b3/12384775/1a8a22b284c5/curroncol-32-00436-g001.jpg

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