Getting a word in edgeways? Patient group participation in the appraisal process of the National Institute for Clinical Excellence Available to Purchase

This paper examines patient organisations’ participation in the technology appraisals process of the National Institute for Clinical Excellence (NICE). In particular, it considers two policy areas prominent in recent UK government health reforms – patient participation and evidence‐based medicine (EBM). Data have largely been obtained from unstructured interviews with patient/carer groups involved in NICE’s technology appraisals, patient/carer representatives from NICE’s committees, and NICE personnel, supplemented by observation of NICE’s Board and Partners’ Council meetings, and analysis of documentary evidence. The paper focuses on the nature of “evidence” in NICE’s appraisals process, in particular patient groups’ concerns about the relative “weights” attached to patient and scientific evidence. NICE has taken some steps to allay such concerns, but more clarity is needed about how evidence from disparate sources is handled, if patient groups are to feel that their submissions of evidence have had more than marginal impact.