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数字化患者社区能否成为以患者为中心的试验设计的起点?

Could digital patient communities be the launch pad for patient-centric trial design?

作者信息

Wicks Paul

机构信息

PatientsLikeMe, 155 2nd Street, Cambridge, MA 02141, USA.

出版信息

Trials. 2014 May 15;15:172. doi: 10.1186/1745-6215-15-172.

Abstract

The system of medical discovery does not revolve around patients as unique individuals with preferences, needs, and desires. Rather it revolves around scientific scrutiny, the needs of the sponsor, and the desires for regulatory approval. The patient is only a subject. Is it any wonder, then, that some patients have rejected the current medical paradigm and sought to find their own path?

摘要

医学发现体系并非围绕着作为具有偏好、需求和愿望的独特个体的患者展开。相反,它围绕着科学审查、资助者的需求以及获得监管批准的愿望。患者仅仅是一个研究对象。那么,一些患者拒绝当前的医学范式并试图寻找自己的道路,这有什么奇怪的吗?

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