Faculty of Social Sciences, University of Stirling, Stirling, UK.
Department of Sociology, University of Surrey, London, UK.
Sociol Health Illn. 2024 Sep;46(7):1327-1344. doi: 10.1111/1467-9566.13785. Epub 2024 May 8.
Patient and public involvement and engagement (PPIE) is an increasingly important component of research conduct to enhance processes and potential for impact, yet is rarely critically interrogated. This paper draws on Foucauldian analysis to highlight the disciplinary powers and tensions arising in PPIE. The paper draws on a nested evaluation interview study with three PPIE members and eight academics, who had been involved in an implementation science study focused on palliative care. PPIE members were involved in the whole study and are co-authors of this article. Through shared values and commitments to the study, a team culture of equality was developed. Yet while power was dispersed and taken-up by all team members, in so doing a self-governance approach within the team was developed. The pace and focus of discussions was at times more subjugating than co-production. Identities and positions were porous; the simplistic division of 'academic' and 'PPIE' did not stand up to scrutiny, with an increasing blurring of boundaries as people's experiences and insights changed over time. Continual, subtle, negotiations of roles, inputs and identities were manifest throughout the project. PPIE in research involves subtle, complex and ongoing disciplinary practices enacted by all members of the team.
患者和公众参与和投入（PPIE）是研究开展中越来越重要的组成部分，可增强研究过程和潜在影响力，但很少受到批判性的质疑。本文借鉴福柯的分析，强调了 PPIE 中出现的纪律权力和紧张关系。本文借鉴了一项嵌套评估访谈研究，其中包括三名 PPIE 成员和八名学者，他们参与了一项关注姑息治疗的实施科学研究。PPIE 成员参与了整个研究，也是本文的共同作者。通过共同的价值观和对研究的承诺，团队建立了平等的文化。然而，虽然权力由所有团队成员分散和承担，但团队内部也发展出了自我管理的方法。讨论的速度和重点有时更具压制性，而不是共同产生。身份和立场是不固定的；“学术”和“PPIE”之间简单的划分经不起推敲，随着人们的经验和见解随着时间的推移而变化，界限越来越模糊。在整个项目中，都明显存在着对角色、投入和身份的持续、微妙的谈判。研究中的 PPIE 涉及到团队所有成员实施的微妙、复杂和持续的纪律实践。
