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一种重要的伙伴关系:患者权益倡导者与合作团体。

An essential partnership: patient advocates and cooperative groups.

作者信息

Collyar Deborah

机构信息

PAIR: Patient Advocates In Research, Danville, CA 94256-1551, USA.

出版信息

Semin Oncol. 2008 Oct;35(5):553-5. doi: 10.1053/j.seminoncol.2008.07.009.

Abstract

Cancer patient advocates have been working with the National Cancer Institute (NCI)-sponsored cooperative groups since the early 1990s. These partnerships have evolved over time and have become integral to each cooperative group as they strive to develop and validate better cancer treatments so that patients live longer. Patient advocates are now involved in concept and protocol development in disease, modality, and administrative committees to confirm that requirements are relevant and feasible for cancer patients. Approval and activation steps also are key focus areas, as are recruitment plans. Patient advocates also participate in executive decisions in some cooperative groups to concentrate efforts on clinical trial results that improve patients' live rather than solely answering interesting scientific questions. Patient advocates also contribute collectively through the Patient Advisory Board (PAB) to the Coalition of Cancer Cooperative Groups by sharing best practices, addressing emerging research issues, and challenging cooperative group leadership to work together in new ways. These voluntary efforts with NCI and the cooperative groups endeavor to help fix problems in the research enterprise so that tangible results can be implemented more quickly for people.

摘要

自20世纪90年代初以来,癌症患者权益倡导者就一直在与美国国立癌症研究所(NCI)资助的合作组合作。这些伙伴关系随着时间的推移不断发展,并且在每个合作组努力开发和验证更好的癌症治疗方法以使患者活得更长的过程中,已成为其不可或缺的一部分。患者权益倡导者现在参与疾病、治疗方式和管理委员会的概念及方案制定,以确认相关要求对癌症患者而言是切实可行的。批准和启动步骤以及招募计划也是重点关注领域。患者权益倡导者还在一些合作组参与执行决策,将精力集中在改善患者生活的临床试验结果上,而不仅仅是回答有趣的科学问题。患者权益倡导者还通过患者咨询委员会(PAB)为癌症合作组联盟做出集体贡献,分享最佳实践经验,解决新出现的研究问题,并促使合作组领导层以新的方式共同努力。这些与NCI和合作组的自愿努力旨在帮助解决研究工作中的问题,以便能更快地为人们带来切实成果。

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