Patient involvement in developing clinical guidelines

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 …