OBJECTIVES:

We sought to investigate how patient involvement is incorporated in health technology assessment (HTA) in the United Kingdom, to determine the impact of patient feedback on final appraisals, and to explore changes in patient involvement over time and any associations with positive/negative recommendations.

METHODS:

We reviewed National Institute for Health and Care Excellence (NICE) guidance and Scottish Medicines Consortium (SMC) advice for breast or ovarian cancer therapies published between 2018-2022. A data extraction tool captured patient feedback as reported in final technology appraisals in seven areas (prognosis, unmet need, overall and/or progression-free survival, generalisability, quality-of-life [QoL], impact on family/caregivers, impact of side effects).

RESULTS:

For breast cancer therapies, the most frequently reported patient feedback in NICE appraisals related to survival and side effects (12/13 appraisals). For SMC appraisals, patient feedback on QoL was most frequently reported (12/16 appraisals). The least frequently reported type of feedback related to prognosis (4/13 NICE and 4/16 SMC appraisals). At least six of the seven feedback areas were incorporated in 3/12 NICE and 2/16 SMC appraisals. No trends of patient involvement over time or associations with recommendations were observed.

For ovarian cancer therapies, the most frequently reported feedback in SMC appraisals related to prognosis, impact on family/caregivers, and QoL (5/6 appraisals). For NICE appraisals, feedback on prognosis was most frequently reported (4/6 appraisals). The least frequently reported feedback was for side effects (1/6 NICE appraisals) and unmet needs (1/6 SMC appraisals).

CONCLUSIONS:

Patient feedback in NICE/SMC appraisals is sought systematically for a range of areas. However, the impacts of specific feedback on agency recommendations is unclear from the information reported. Despite efforts to incorporate patient involvement into the appraisal process, conclusions cannot be drawn on the extent to which this feedback is evaluated and affected final decision-making.