Experiential evidence must be open to scrutiny and criticism The literature on development of clinical guidelines generally accepts that patients and carers should be involved in the process.123 Patients contribute subjective and practical knowledge of a condition, including what it feels like, what challenges it poses to living a productive and fulfilling life, and how to manage symptoms and flare-ups. Patient knowledge (“experiential evidence” or “lived experience”) often complements but sometimes conflicts with the professional knowledge of clinicians and academics on guidance development panels. Patient input to guideline panels has contributed to better care experiences and better health outcomes2 but is not without controversy. Most guideline development panels worldwide follow the grading of recommendations assessment, development, and evaluation (GRADE) approach. These methods set out how to assess and combine research evidence by weighting it according to study design, risk of bias, and magnitude of effect.4 GRADE methods are widely accepted but have been described as hierarchical, quantitative, and exclusively focused on research evidence.567 Partly in response to such criticism, GRADE guidance has evolved to incorporate research into patients’ values and preferences (usually in the form of patient reported outcome measures).89 However, this approach to capturing the patient experience has been justifiably criticised for “subordinating patient …

中文翻译：

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患者参与制定临床指南


经验证据必须接受审查和批评 关于制定临床指南的文献通常认为患者和护理人员应该参与这一过程。123 患者贡献了对病情的主观和实践知识，包括感觉如何，它对过上富有成效和充实的生活构成了什么挑战，以及如何管理症状和发作。患者知识（“经验证据”或“生活经验”）通常与指南开发小组中的临床医生和学者的专业知识相辅相成，但有时与之冲突。患者对指南小组的意见有助于改善护理体验和更好的健康结果2，但并非没有争议。全球大多数指南制定小组都遵循建议分级评估、制定和评价 （GRADE） 方法。这些方法规定了如何评估和组合研究证据，根据研究设计、偏倚风险和效应大小对研究证据进行加权。4 GRADE 方法被广泛接受，但被描述为分层、定量且仅专注于研究证据。567 部分作为对此类批评的回应，GRADE 指南已经发展为将研究纳入患者的价值观和偏好（通常以患者报告的结果测量的形式）.89 然而， 这种捕获患者体验的方法被合理地批评为“从属于患者......