Maguire Kath, Britten Nicky
Exeter Medical School, Exeter University.
Sociol Health Illn. 2018 Mar;40(3):463-477. doi: 10.1111/1467-9566.12655. Epub 2017 Dec 27.
Patient and public involvement in health research and care has been repeatedly theorised using the metaphor of spaces, knowledge spaces and participatory citizenship spaces. Drawing on data from a three year qualitative study of people involved in health research with organisations across England, this article explores where these spaces fit in a wider social, political and historical landscape. It outlines a theme recurring frequently in the study data: a unified public/patient/service-user perspective in opposition to a professional/clinical/academic view. This is discussed in relation to Habermas's division between the lifeworld and system. Patient and public involvement is mapped as spaces between these spheres, therefore between the social norms pertaining to them. In this way, involvement spaces are seen as liminal, in-between or threshold spaces; this concept provides us with new insights on both the opportunities and the conflicts that are integral in the ambiguous, complex interactions which take place in these spaces.
患者及公众参与健康研究与照护,已多次通过空间隐喻进行理论化阐释,包括知识空间和参与式公民空间。本文借鉴了一项为期三年的定性研究的数据,该研究涉及英格兰各地参与健康研究的人员与组织,探讨了这些空间在更广泛的社会、政治和历史背景中的位置。文章概述了研究数据中频繁出现的一个主题:一种统一的公众/患者/服务使用者视角,与专业/临床/学术观点相对立。这一主题结合哈贝马斯关于生活世界与系统的划分进行了讨论。患者及公众参与被描绘为这些领域之间的空间,因此也是与之相关的社会规范之间的空间。通过这种方式,参与空间被视为阈限空间、中间空间或临界空间;这一概念为我们提供了新的见解,有助于理解这些空间中模棱两可、复杂的互动中所固有的机遇与冲突。