组建患者小组：将患者价值观与偏好整合融入指南制订过程的建议

Organizing Patient Panel: Suggestions on Incorporating Patient's Values and Preferences into Guideline Development

摘要: 患者参与指南制订作为新兴的国际研究热点，国内外相关方法学研究存在较大差异。本文倡导组建患者小组，并围绕患者小组的工作方式、参与指南制订的患者代表来源及选择、参与环节、管理及支持等方面进行探讨，提出患者小组持续性、结构化与指南共识专家组进行患者价值观与偏好信息的双向交流模式等方法学优化建议，以期为国内患者参与指南制订提供参考。

Abstract: As an emerging international research hotspot, the development of guidelines with patient participation has seen great differences in related methodological research in China and abroad. This paper advocates the establishment of patient panel, and discusses the working methods of patient panel, the source and selection of patient representatives, participation phases, management, and support. Methodological optimization suggestions are also proposed, such as the sustainability of patients, structuring and two-way communication mode made by a consensus expert group involving patients' values and preferences, in order to provide a reference for the development of patient participation guidelines in China.