The complexities of developing equal relationships in patient and public involvement in health research
The complexities of developing equal relationships in patient and public involvement in health research
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DOI：
10.1057/s41285-020-00142-0
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发表时间：
2020-06-05
影响因子：
1.6
通讯作者：
Pearce, Caroline
中科院分区：
文献类型：
--
作者：
Pearce, Caroline
鼓励卫生研究人员让患者和公众参与研究过程的每个阶段。病人和公众参与(PPI)寻求纠正卫生研究生产中明显的“民主赤字”。虽然许多人声称参与并越来越多地与患者和公众成员共同开展研究的好处，但事实证明，很难衡量其影响。为了更好地理解参与活动为什么会“失败”或“成功”，本文重点研究了购买力平价与联合制作的关系动态。通过对英国卫生研究指南中的关系话语的审查，有人认为，虽然重点放在“分享权力”上，但对制度结构的限制以及如何在PPI和联合制作环境中表现、加强或抵制权力不对称的理解仍然有限。为了重塑和重新思考现有的实践，我研究了支撑购买力平价和联合制作的理论，参考了哈贝马斯的(交往行动理论，政治出版社，剑桥，1987年)和穆夫的(社会研究66：745-758,1999年；Politica Comun，10.3998/pc.123227.0009.011,2016年)，对比了公众参与在民主设计中的作用的观点。我认为，不能简单地用指导方针和言辞来消除或限制权力差异，必须将购买力平价和联合制作理解为深层次的关系和相互作用的过程。
Health researchers are encouraged to involve patients and the public in each stage of the research process. Patient and public involvement (PPI) seeks to redress an apparent 'democratic deficit' in the production of health research. While many claims have been made of the benefits of involving and increasingly co-producing research with patient and public members, it has proven difficult to measure its impact. To inform understanding of why involvement initiatives 'fail' or 'succeed', this paper focuses on the relational dynamics of PPI and co-production. Through an examination of the discourse of relationships in UK health research guidance it is argued that while emphasis is placed on 'sharing power', there persists limited understanding of the constraints of institutional structures and how power asymmetries come to be performed, reinforced or resisted in PPI and co-production settings. To reshape and rethink existing practices I examine the theories that underlie PPI and co-production referring to Habermas' (The theory of communicative action, Polity Press, Cambridge, 1987) and Mouffe's (Social Research 66:745-758, 1999; Politica Comun, 10.3998/pc.12322227.0009.011, 2016) contrasting perspectives on the role of public participation in democratic designs. I suggest that power differentials cannot simply be eradicated or bracketed by guidelines and rhetoric, and that PPI and co-production must be understood as profoundly relational and interactional processes.