Institute for Health Research, University of Exeter Medical School, Exeter, UK.
Peninsula Public Engagement Group (PenPEG), NIHR ARC South West Peninsula, Institute for Health Research, University of Exeter Medical School, Exeter, UK.
Health Expect. 2022 Aug;25(4):1967-1978. doi: 10.1111/hex.13553. Epub 2022 Jun 30.
Patient and public involvement in research is anchored in moral and epistemological rationales. Moral rationales relate to the public having a right to influence how knowledge about them is generated. Epistemological rationales relate to how research design and implementation can improve when informed by experiential, as well as technical, knowledge. In other words, public involvement can increase the epistemological resources of researchers, and contribute to research that is fit for purpose and has high external validity.
This article presents an analysis of 3 meetings and 11 interviews with public collaborators and researchers in three UK-based health research studies. Data comprised transcripts of audio-recorded research meetings and interviews with public collaborators and researchers. Data were first analysed to develop a data-informed definition of experiential knowledge, then thematically to investigate how this experiential knowledge was considered and received within the research space.
At meetings, public collaborators shared their experiential knowledge as stories, comments, questions, answers and when referring to their own roles. They were aware of crossing a boundary from everyday life, and some adapted their contributions to fit within the research space. Although researchers and public collaborators made efforts to create an inclusive climate, obstacles to impact were identified.
Considering experiential knowledge as a boundary object highlights that this knowledge has a different form to other kinds of knowledge that contribute to research. To enable impact from experiential knowledge, researchers need to create a space where public collaborators experience epistemic justice.
The Peninsula Public Engagement Group (PenPEG) was involved in the planning and conceptualization of the study, including the development of the ethics application and the interview schedules. One member of this group (Richard Fitzgerald) and one from outside the group (Leon Farmer), were full members of the author team and were involved in the data analysis. Leon Farmer has since become a member of PenPEG. Richard Fitzgerald and Leon Farmer were not involved in the three research studies sampled for this study. Sadly Richard Fitzgerald died during the course of this study.
患者和公众参与研究的基础是道德和认识论的理由。道德理由涉及公众有权影响他们的知识是如何产生的。认识论的理由涉及到如何在经验知识以及技术知识的基础上改进研究设计和实施。换句话说，公众参与可以增加研究人员的认识论资源，并有助于研究目的明确且具有高度外部有效性。
本文对三个英国健康研究项目中的三个会议和十一名公共合作者和研究人员进行了分析。数据包括音频记录的研究会议的记录和公共合作者与研究人员的访谈记录。数据首先进行了分析，以制定一个数据驱动的经验知识定义，然后进行主题分析，以调查这种经验知识是如何在研究空间中被考虑和接受的。
在会议上，公共合作者分享了他们的经验知识，包括故事、评论、问题、答案，以及在提到自己的角色时。他们意识到自己从日常生活中跨越了一个边界，一些人调整了自己的贡献以适应研究空间。尽管研究人员和公共合作者努力营造包容的氛围，但仍发现了影响的障碍。
将经验知识视为边界对象突出表明，这种知识与有助于研究的其他类型的知识形式不同。为了使经验知识产生影响，研究人员需要创造一个公共合作者能够体验到认识论正义的空间。
半岛公众参与小组（PenPEG）参与了该研究的规划和概念化，包括伦理申请和访谈计划的制定。该小组的一名成员（Richard Fitzgerald）和一名来自小组外的成员（Leon Farmer）是作者团队的正式成员，并参与了数据分析。此后，Leon Farmer 成为了 PenPEG 的成员。Richard Fitzgerald 和 Leon Farmer 没有参与本研究抽样的三个研究项目。遗憾的是，Richard Fitzgerald 在研究过程中去世。
