Democratic Justifications for Patient Public Involvement and Engagement in Health Research: An Exploration of the Theoretical Debates and Practical Challenges.
Democratic Justifications for Patient Public Involvement and Engagement in Health Research: An Exploration of the Theoretical Debates and Practical Challenges.
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DOI：
10.1093/jmp/jhad024
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发表时间：
2023-06-20
影响因子：
1.6
通讯作者：
Frith, Lucy
中科院分区：
文献类型：
--
作者：
Frith, Lucy
关键词：
在过去的十年中，关于患者公众参与和参与（PPIE）的文献在健康研究中显着增长，颁布了各种各样的定义和拓扑结构。这导致了关于PPIE在健康研究中的中心功能和目的的争议，这反过来又使得在实践中难以评估和评价PPIE。本文认为，PPIE最重要的功能是试图使健康研究更加民主。将这一功能放在首位，并将PPIE置于当代民主参与形式变化的更广泛背景下，为PPIE在研究中应该努力实现的目标提供了更大的概念清晰度。将PPIE概念化为民主化的一种形式有许多好处。首先，什么是适当的理论，规范合理的和可行的标准PPIE的做法可以开发，这可以提供工具，以解决合法性和问责制的问题，一直困扰着PPIE社区。第二，这项工作可以用来形成一个研究议程的基础，以调查PPIE在健康研究中是如何运作的，以及它如何促进和/或改善健康研究中的民主进程。
The literature on patient public involvement and engagement (PPIE) in health research has grown significantly in the last decade, with a diverse range of definitions and topologies promulgated. This has led to disputes over what the central functions and purpose of PPIE in health research is, and this in turn makes it difficult to assess and evaluate PPIE in practice. This paper argues that the most important function of PPIE is the attempt to make health research more democratic. Bringing this function to the fore and locating PPIE in the wider context of changes in contemporary forms of democratic engagement provides greater conceptual clarity over what PPIE in research should be trying to achieve. Conceptualizing PPIE as a form of democratization has a number of benefits. First, theories of what are appropriate, normatively justifiable and workable criteria for PPIE practices can be developed, and this can provide tools to address the legitimacy and accountability questions that have troubled the PPIE community. Second, this work can be used to form the basis of a research agenda to investigate how PPIE in health research operates, and how it can facilitate and/or improve democratic processes in health research.
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