Patient involvement in developing clinical guidelines
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
