What Is the Impact of Patient Voice on NICE Recommendations for Drugs Assessed in 2024?
Author(s)
Varenya Jalan, MSc1, Shiv S. Shan, MS2, Isobel O. Owens-Smith, MChem2.
1London, United Kingdom, 2Value and Evidence, Red Nucleus, London, United Kingdom.
1London, United Kingdom, 2Value and Evidence, Red Nucleus, London, United Kingdom.
OBJECTIVES: While NICE has a clear pathway for how patient organisations and experts can submit statements and participate in committee meetings, the degree to which these inputs influence final recommendations is not consistently clear. This research aims to examine how patient voices — both individual and organisational — shaped committee deliberations and final recommendations in recent technology appraisals (TAs).
METHODS: TAs published in 2024/25 were identified using the TA Recommendations (Excel) dataset from the NICE website. Appraisals were excluded if they were: (a) terminated due to non-submission, (b) multiple technology appraisals (MTAs), or (c) oncology-related products. For each, the Final Draft Guidance and Committee Papers were reviewed and data were extracted on: (1) presence and role of patient organisations and experts; (2) type of contributions; (3) key themes raised; (4) whether input was discussed in committee deliberations; (5) whether it was reflected in final guidance. The overall impact was rated as high (noted in final guidance with a role in shaping recommendation), moderate (referenced in final guidance but not central to recommendation) or low (no clear reference in final guidance).
RESULTS: Patient involvement was observed in >90% of the 30 TAs assessed but the impact varies. The number of patient experts participating ranged from 0-2. Key themes raised included disease burden (~80%), treatment administration barriers (~70%), and unmet need (75%). Patient insights were cited in ~60% of the final guidance documents. The assessed impact of patient input was rated high in ~30%, moderate in ~40%, and low or unclear in ~25% of cases.
CONCLUSIONS: In some cases, patient input materially affected committee reasoning by providing contextual information. However, uncertainty remains regarding the extent of their impact on influencing the final recommendations. Enhancing the consistency and visibility of patient involvement will be essential to support transparent and robust decision-making in the UK.
METHODS: TAs published in 2024/25 were identified using the TA Recommendations (Excel) dataset from the NICE website. Appraisals were excluded if they were: (a) terminated due to non-submission, (b) multiple technology appraisals (MTAs), or (c) oncology-related products. For each, the Final Draft Guidance and Committee Papers were reviewed and data were extracted on: (1) presence and role of patient organisations and experts; (2) type of contributions; (3) key themes raised; (4) whether input was discussed in committee deliberations; (5) whether it was reflected in final guidance. The overall impact was rated as high (noted in final guidance with a role in shaping recommendation), moderate (referenced in final guidance but not central to recommendation) or low (no clear reference in final guidance).
RESULTS: Patient involvement was observed in >90% of the 30 TAs assessed but the impact varies. The number of patient experts participating ranged from 0-2. Key themes raised included disease burden (~80%), treatment administration barriers (~70%), and unmet need (75%). Patient insights were cited in ~60% of the final guidance documents. The assessed impact of patient input was rated high in ~30%, moderate in ~40%, and low or unclear in ~25% of cases.
CONCLUSIONS: In some cases, patient input materially affected committee reasoning by providing contextual information. However, uncertainty remains regarding the extent of their impact on influencing the final recommendations. Enhancing the consistency and visibility of patient involvement will be essential to support transparent and robust decision-making in the UK.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
HTA367
Topic
Health Technology Assessment, Patient-Centered Research
Topic Subcategory
Decision & Deliberative Processes
Disease
No Additional Disease & Conditions/Specialized Treatment Areas