Getting their say, or getting their way? ‐ Has participation strengthened the patient “voice” in the National Institute for Clinical Excellence?

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Abstract
Examines the interaction of patient organisations with the National Institute for Clinical Excellence (NICE) during the first two years of its existence. In particular, it considers the intersection of two policy areas prominent in the Labour Government’s health reforms – patient participation and evidence‐based medicine. Data has been obtained from unstructured interviews with patient/carer representatives from NICE’s committees and patient/carer groups with an interest in NICE’s technology appraisals, supplemented by observation of NICE’s Board and Partners’ Council meetings, and analysis of documentary evidence. The paper focuses on “formal” and “informal” involvement of patient groups in NICE’s structures and appraisals process. Most interviewees felt that the patient voice had been strengthened in these areas, though there was concern about the relative weights of patient and scientific evidence. Thus NICE illustrates two paradoxes in Labour’s policy objectives – centralisation/participation and evidence‐based medicine/patient perspective – which may become problematic.