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

• Published in: Health expectations : an international journal of public participation in health care and health policy Vol. 21; no. 1; pp. 128 - 137
• Main Authors: Hashem, Ferhana, Calnan, Michael W., Brown, Patrick R.
• Format: Journal Article
• Language: English
• Published: England John Wiley & Sons, Inc 01.02.2018; John Wiley and Sons Inc
• Subjects: Advisory Committees; Appraisal; Appraisals; Caregivers; Citizen participation; Clinical decision making; Committees; Cost analysis; Cost-Benefit Analysis; Data collection; Decision Making; drug appraisals; Drug therapy; Drugs; Effectiveness; Evidence-based medicine; Experts; Funding; Health care; Health Care Rationing; Health services; Humans; Medicine; Meetings; NICE; Original Research Paper; Original Research Papers; Participation; Patient advocacy; patient experts; Patient Participation; Patient satisfaction; Patients; Pharmaceutical industry; Pharmaceutical Preparations - economics; Pharmaceutical Preparations - supply & distribution; Prospective Studies; Public involvement; Quality; rationing; Researchers; State Medicine - organization & administration; Technology Assessment, Biomedical - economics; United Kingdom; written and oral evidence; United Kingdom; United Kingdom > UK; England; NICE; drug appraisals; decision-making; rationing; written and oral evidence; patient experts
• ISSN: 1369-6513; 1369-7625
• DOI: 10.1111/hex.12594

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.