Patient experiential knowledge is important for the quality and responsiveness of healthcare systems. However, it is not rare for patients to struggle to have their knowledge recognised as credible and valuable. This study explores how patient organisations work to adjust patient knowledge to formats recognisable and acceptable by healthcare governance decision-makers. Using the case of patient organisations in Russia, we show that such formatting involves changes in language, practices, and materiality that contribute to channelling patient participation into specific routes and forms while marginalising others. Channelling of patient participation, then, rather than being a result of direct coercion, emerges as a distributed process continuously co-produced by a multitude of actors, such as state administration, patient organisations themselves, patient surveys, consultative spaces, and normative acts.

患者体验知识对于医疗保健系统的质量和响应能力非常重要。然而，患者努力让自己的知识被认可为可信和有价值的情况并不罕见。本研究探讨了患者组织如何将患者知识调整为医疗保健治理决策者可识别和接受的格式。通过俄罗斯患者组织的案例，我们表明，这种格式涉及语言、实践和实质性的变化，这些变化有助于将患者的参与引导到特定的途径和形式，同时边缘化其他人。那么，患者参与的引导并不是直接强制的结果，而是作为一个由众多参与者（例如国家行政部门、患者组织本身、患者调查、咨询空间和规范行为）不断共同创造的分布式过程而出现。