Erikainen Sonja, Stewart Ellen, Filipe Angela Marques, Chan Sarah, Cunningham-Burley Sarah, Ilson Sophie, King Gabrielle, Porteous Carol, Sinclair Stephanie, Webb Jamie
Centre for Biomedicine, Self and Society, Usher Institute, University of Edinburgh, Edinburgh, EH8 9AG, UK.
Wellcome Open Res. 2022 Feb 10;6:58. doi: 10.12688/wellcomeopenres.16535.2. eCollection 2021.
Engagement with publics, patients, and stakeholders is an important part of the health research environment today,and different modalities of 'engaged' health research have proliferated in recent years. Yet, th ere is no consensus on what, exactly, 'engaging' means, what it should look like, and what the aims, justifications, or motivations for it should be. In this paper, we set out what we see as important, outstanding challenges around the practice and theory of engaging and consider the tensions and possibilities that the diverse landscape of engaging evokes. We examine the roots, present modalities and institutional frameworks that have been erected around engaging, including how they shape and delimit how engagements are framed, enacted, and justified. We inspect the related issue of knowledge production within and through engagements, addressing whether engagements can, or should, be framed as knowledge producing activities. We then unpack the question of how engagements are or could be valued and evaluated, emphasising the plural ways in which 'value' can be conceptualised and generated. We conclude by calling for a philosophy of engagements that can capture the diversity of related practices, concepts and justifications around engagements, and account for the plurality of knowledges and value that engagements engender, while remaining flexible and attentive to the structural conditions under which engagements occur. Such philosophy should be a feminist one, informed by feminist epistemological and methodological approaches to equitable modes of research participation, knowledge production, and valuing. Especially, translating feminist tools of reflexivity and positionalityinto the sphere of engagements can enable a synergy of empirical, epistemic and normative considerations in developing accounts of engaging in both theory and praxis. Modestly, here, we hope to carve out the starting points for this work.
与公众、患者及利益相关者的互动是当今健康研究环境的重要组成部分，近年来，各种“参与式”健康研究模式不断涌现。然而，对于“参与”究竟意味着什么、应该是什么样以及其目标、理由或动机是什么，尚无共识。在本文中，我们阐述了我们认为围绕参与实践和理论存在的重要且突出的挑战，并思考参与的多样化格局所引发的紧张关系和可能性。我们审视了参与的根源、当前模式以及围绕参与建立的制度框架，包括它们如何塑造和界定参与的框架、实施方式及合理性。我们考察了参与过程中及通过参与产生知识的相关问题，探讨参与是否能够或应该被界定为知识生产活动。然后，我们剖析了如何对参与进行或能够进行价值评估的问题，强调“价值”可以被概念化和产生的多种方式。我们呼吁建立一种参与哲学，这种哲学能够涵盖围绕参与的相关实践、概念和理由的多样性，解释参与所产生的知识和价值的多元性，同时保持灵活性并关注参与发生的结构条件。这样的哲学应该是一种女性主义哲学，以女性主义认识论和方法论为基础，探讨公平的研究参与模式、知识生产和价值评估。特别是，将女性主义的反思性和定位性工具应用于参与领域，能够在理论和实践层面发展参与描述时，实现实证、认知和规范考量的协同作用。在此，我们希望为这项工作勾勒出起点。
