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患者和公众参与皮肤科研究:综述。

Patient and Public Involvement in Dermatology Research: A Review.

机构信息

University of Leeds Medical School, Leeds, UK.

Poznan University of Medical Sciences, Poznan, Poland.

出版信息

Am J Clin Dermatol. 2022 May;23(3):319-329. doi: 10.1007/s40257-022-00680-5. Epub 2022 Mar 29.

Abstract

Patient and public involvement (PPI) in research is defined as research being carried out 'with' or 'by' members of the public, patients, and carers, on both an individual and a group level, rather than simply 'about', or 'for' them. Within dermatology, PPI is increasingly recognised as a vital component of research as it helps to ensure that research remains relevant to the populations we intend to serve. Dermatology scholarship, with its rich psychosocial implications due to the stigma, physical disability, and mental health burdens these conditions may incur, is in a unique position to benefit from PPI to unlock previously inaccessible patient lived experiences or therapeutic consequences. Throughout the rapid growth of PPI, it has been infused throughout the research lifecycle, from design to dissemination and beyond. After first explaining the principles of PPI, we examine the existing evidence base at each research stage to explore whether our specialty has effectively harnessed this approach and to identify any subsequent impact of PPI. Finally, we scrutinise the challenges faced by those implementing PPI in dermatology research.

摘要

患者和公众参与(PPI)在研究中被定义为在个体和群体层面上,由公众、患者和照顾者共同开展或参与的研究,而不仅仅是“关于”或“为”他们开展的研究。在皮肤病学领域,PPI 越来越被认为是研究的一个重要组成部分,因为它有助于确保研究始终与我们打算服务的人群相关。由于这些疾病可能带来的耻辱感、身体残疾和心理健康负担,皮肤病学研究具有丰富的心理社会影响,因此特别适合从 PPI 中受益,以揭示以前无法获得的患者生活体验或治疗后果。在 PPI 的快速发展过程中,它已经贯穿于整个研究生命周期,从设计到传播,甚至超越了这一阶段。在首先解释 PPI 的原则之后,我们在每个研究阶段检查现有的证据基础,以探讨我们的专业是否有效地利用了这种方法,并确定 PPI 的任何后续影响。最后,我们仔细研究在皮肤病学研究中实施 PPI 所面临的挑战。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3a69/8962283/d8a195c43895/40257_2022_680_Fig1_HTML.jpg

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