Abstract：
Health researchers increasingly work with patients in a participatory fashion. Active patient involvement throughout the research process can provide epistemic justice to patients who have often only had an informant role in traditional health research. This study aims to conduct participatory research on patient experiences to create a solid research agenda with patients and discuss it with relevant stakeholders. We followed a participatory research design in 18 sub-studies, including interviews and group sessions (n = 404 patients), and dialogue sessions (n = 367 professionals and directors in healthcare and social work, municipality civil servants, and funding agencies) on patient experiences with psychiatric care, community care, daycare, public health, and social work. Findings from the eight-year study show that four priorities stood out: attention for misuse of power and abuse; meaningful participation; non-human assistance, and peer support. Moreover, that: (1) patients, based on their experiences, prioritize different topics than experts; (2) most topics are trans-diagnostic and point to the value of a cross-disability approach; and (3) the priorities of patients are all too easily dismissed and require ethics work to prevent epistemic injustice. Long-term investment in a transdisciplinary community of practice offers a solid basis for addressing patient-centered topics and may impact the quality of life of people living with chronic illness, disability, or vulnerability.
摘要：
健康研究人员越来越多地以参与的方式与患者合作。在整个研究过程中，患者的积极参与可以为通常仅在传统健康研究中具有信息作用的患者提供认知正义。本研究旨在对患者体验进行参与性研究，以与患者建立可靠的研究议程，并与相关利益相关者进行讨论。我们在18个子研究中遵循了参与式研究设计，包括访谈和小组会议（n=404名患者），和对话会议(n=367名医疗保健和社会工作专业人员和主任，市政公务员,和资助机构)关于患者接受精神病治疗的经历，社区护理,托儿所,公共卫生,和社会工作。这项为期八年的研究结果表明，有四个优先事项:关注滥用权力和滥用权力；有意义的参与；非人类援助，和同行支持。此外，（1）患者，根据他们的经验，与专家相比，优先考虑不同的主题；（2）大多数主题是跨诊断性的，并指出跨残疾方法的价值；（3）患者的优先事项很容易被驳回，需要道德工作来防止认知不公正。对跨学科实践社区的长期投资为解决以患者为中心的主题提供了坚实的基础，并可能影响慢性病患者的生活质量。残疾,或脆弱性。
