Decision making in NICE single technological appraisals: How does NICE incorporate patient perspectives?

CONTEXT: The National Institute for Health and Care Excellence (NICE) has an explicit mandate to include patient and public involvement in the appraisal of medicines to be available for funding on the NHS. NICE involves an appraisal committee who are required to take on board experiential evidence from patient experts alongside population-based evidence on clinical and cost-effectiveness when making a decision whether to fund a drug. OBJECTIVE: This paper considers how NICE Single Technological Appraisal (STA) committees attempt to incorporate the views of patients in making decisions about funding medicines on the NHS. METHODS: A prospective design was employed to follow three pharmaceutical products involving three different appraisal committees. Three data collection methods were used: analysis of documentary evidence sent by NICE, non-participant unstructured observations of the open and closed sessions of meetings and qualitative interviews. SETTINGS AND PARTICIPANTS: Unstructured non-participant observations were carried out at nine STA meetings, and 41 semi-structured interviews were undertaken with committee members from NICE's STA committees, patient experts, analysts from NICE's project team and drug manufacturers. RESULTS: Our analysis showed how the committees displayed a preference for an ideal-type of patient representative, disagreement among the committee when weighing-up patient statements in the STA process and more pre-preparation support for patient involvement. CONCLUSIONS: Although NICE has attempted to adopt an approach flexible to patients and carers through formal decision-making arrangements that incorporate patient views, nonetheless, the processes of the STAs can in fact undermine the very evidence collected from patient representatives.