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变革性研究:在癌症研究的各个阶段让患者权益倡导者参与进来。

Transforming research: engaging patient advocates at all stages of cancer research.

作者信息

Ciccarella AnneMarie, Staley Alicia C, Franco Aime T

机构信息

Independent Patient Research Partner, New York, NY, USA.

Akari Health, Charlestown, MA, USA.

出版信息

Ann Transl Med. 2018 May;6(9):167. doi: 10.21037/atm.2018.04.46.

Abstract

In recent years there has been a push to include patients and advocates in clinical research, including in clinical trial design and approval processes. Additionally, increased advocate-driven research funding has led to seats for advocates in the funding review process. However, despite advances that include having patients and advocates involved in clinical research projects that may directly, or eventually, affect their care and treatment, we have much further to go to make this a truly inclusionary participation in research. We have even further to go to actively incorporate patients and advocates throughout the research continuum. Here we review and present current programs and projects that have successfully incorporated patients and advocates into translational research, and propose mechanism and strategies to actively engage patients throughout the research continuum. Our goal in translational cancer research is to improve outcomes for cancer patients. To more successfully and quickly meet this objective we should incorporate patient driven research questions earlier in the process, specifically at the level of basic benchtop research.

摘要

近年来,一直有人推动让患者和倡导者参与临床研究,包括参与临床试验设计和审批流程。此外,倡导者推动的研究资金增加,使得倡导者在资金审查过程中获得了席位。然而,尽管取得了一些进展,包括让患者和倡导者参与可能直接或最终影响其护理和治疗的临床研究项目,但要使这成为真正包容的研究参与,我们还有很长的路要走。要在整个研究过程中积极纳入患者和倡导者,我们还有更远的路要走。在此,我们回顾并介绍了当前已成功将患者和倡导者纳入转化研究的项目和计划,并提出了在整个研究过程中积极吸引患者参与的机制和策略。我们在转化癌症研究中的目标是改善癌症患者的治疗效果。为了更成功、更迅速地实现这一目标,我们应该在过程中更早地纳入患者驱动的研究问题,特别是在基础实验台研究层面。

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