This paper explores how personal experience acquires the status of knowledge and/or evidence in contemporary healthcare contexts that emphasise being both patient-centred and evidence-based. Drawing on a comparative analysis of three case studies ‐ self-help and mutual aid groups; online patient activism; and patient feedback in healthcare service delivery ‐ we foreground: a) the role that different technologies and temporalities play in how experience is turned (or fails to be turned) into knowledge or evidence; b) the role that experts-of-experience, in addition to the more frequently referenced experts-by-experience, play in mediating how, when and why experience is turned into an epistemic resource; and finally, c) how the need to be ‘evidence-based’ remains a persistent, yet at times productive, challenge to how patient and user experiences are incorporated in contemporary healthcare policy and practice. Throughout the paper, we argue that it is necessary to look at both democratic and epistemic imperatives for including patient and service users in healthcare services and policymaking based on their experience.

中文翻译：

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知识、证据、专长？当代医疗保健经验的认知

本文探讨了在强调以患者为中心和以证据为基础的当代医疗保健环境中，个人经验如何获得知识和/或证据的地位。借鉴三个案例研究的比较分析——自助和互助小组；在线患者行动主义；以及医疗服务提供中的患者反馈——我们强调：a) 不同技术和时间在经验如何转化（或未能转化）为知识或证据方面所起的作用；b) 经验专家，除了更常被引用的经验专家之外，在调解如何、何时以及为何将经验转化为认知资源方面的作用；最后，c）“以证据为基础”的需求如何仍然是一种持久的，但有时是富有成效的，对如何将患者和用户体验融入当代医疗保健政策和实践的挑战。在整篇论文中，我们认为有必要同时考虑民主和认知上的必要性，将患者和服务用户纳入基于他们的经验的医疗保健服务和政策制定中。