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在健康研究中,如何让任何人能够代表那类人群?患者代表性的形式,以及为什么这始终是有争议的。

"How can anybody be representative for those kind of people?" Forms of patient representation in health research, and why it is always contestable.

机构信息

University of Exeter, United Kingdom.

University of Exeter, United Kingdom.

出版信息

Soc Sci Med. 2017 Jun;183:62-69. doi: 10.1016/j.socscimed.2017.04.049. Epub 2017 Apr 27.

Abstract

Different discourses that co-exist within the world of patient and public involvement in health and social care mirror a tangle of historical, social, political and theoretical roots. These range from the radical activism, born of civil rights movements, to a more passive model in which patients are the recipients of information. This paper explores the concept of 'representation' and the ways the concept is used by people serving as 'patient' or 'lay' representatives in a range of roles within research projects, funding bodies and academic institutions. We address the issue of why the representativeness of those involved is contestable. Drawing on qualitative research and engaged practice as well as on literature from social and political sciences we question how people conceptualise their own and their fellows' acts of representation. In doing this we identify nine different conceptualisations of what it is to represent and use these to explore how judgements are made about what can count as legitimate forms of representation.

摘要

不同的话语在患者和公众参与健康和社会关怀的世界中共存,反映了一系列历史、社会、政治和理论根源的交织。这些根源包括源于民权运动的激进行动主义,以及一种更为被动的模式,即患者是信息的接受者。本文探讨了“代表性”的概念,以及在研究项目、资助机构和学术机构中担任“患者”或“外行”代表的人们在各种角色中使用该概念的方式。我们探讨了为什么参与其中的人的代表性是有争议的。我们借鉴了定性研究和参与式实践,以及社会科学和政治学的文献,质疑人们如何概念化自己和他人的代表性行为。在这样做的过程中,我们确定了代表的九个不同概念,并利用这些概念来探讨如何对什么可以算作合法的代表性形式做出判断。

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