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膀胱癌患者权益倡导:全球视角

Bladder Cancer Patient Advocacy: A Global Perspective.

作者信息

Quale Diane Zipursky, Bangs Rick, Smith Monica, Guttman David, Northam Tammy, Winterbottom Andrew, Necchi Andrea, Fiorini Edoardo, Demkiw Stephanie

机构信息

President and co-Founder, Bladder Cancer Advocacy Network.

BCAN, SWOG, and NCI Patient Advocate.

出版信息

Bladder Cancer. 2015 Oct 26;1(2):117-122. doi: 10.3233/BLC-150021.

Abstract

Over the past 20 years, cancer patient advocacy groups have demonstrated that patient engagement in cancer care is essential to improving patient quality of life and outcomes. Bladder cancer patient advocacy only began 10 years ago in the United States, but is now expanding around the globe with non-profit organizations established in Canada, the United Kingdom and Italy, and efforts underway in Australia. These organizations, at different levels of maturity, are raising awareness of bladder cancer and providing essential information and resources to bladder cancer patients and their families. The patient advocacy organizations are also helping to advance research efforts by funding research proposals and facilitating research collaborations. Strong partnerships between these patient advocates and the bladder cancer medical community are essential to ensuringsustainability for these advocacy organizations, increasing funding to support advances in bladder cancer treatment, and improving patient outcomes.

摘要

在过去20年里,癌症患者权益倡导组织已证明,患者参与癌症护理对于提高患者生活质量和治疗效果至关重要。膀胱癌患者权益倡导活动10年前才在美国起步,但如今正在全球范围内扩展,加拿大、英国和意大利都成立了非营利组织,澳大利亚也在开展相关工作。这些处于不同成熟阶段的组织正在提高人们对膀胱癌的认识,并为膀胱癌患者及其家属提供重要信息和资源。患者权益倡导组织还通过资助研究提案和促进研究合作来推动研究工作。这些患者倡导者与膀胱癌医学界之间的紧密合作关系对于确保这些倡导组织的可持续性、增加支持膀胱癌治疗进展的资金以及改善患者治疗效果至关重要。

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