Abstract
INTRODUCTION: Patient involvement is a core principle of the National Institute for Health and Care Excellence (NICE) and we continually strive to improve patient involvement in health technology assessments (HTAs) of medicines. We iteratively surveyed and reviewed how patient involvement can be improved with patient organizations, patient experts, NICE HTA decision-making committees, and staff. We re-examined feedback that we collect on an ongoing basis, as well as one-off evaluations, to check how we can improve patient involvement. Improvements ranged from support for and how we work with patient stakeholders to training the various stakeholders who take part in the HTA process to build up a comprehensive and evolving training package and stimulate a cycle of continually improving patient involvement. METHODS: We reviewed the outcomes and recommendations from the following larger projects: Review of public involvement across NICE 2015; Improving meaningful patient involvement in HTAs 2019; Improving patient expert involvement in committee meetings 2019; and The value of patient expert input 2022. Feedback from monthly surveys of patient experts and organizations was also reviewed. RESULTS: The results included recommendations about: Changing the culture so that patient involvement at NICE is everybody’s business; The key role of the committee chair in including patient experts; The importance of committee culture and behavior in including and valuing patient input; The need for a greater understanding of how NICE technical teams can best support and obtain the most meaningful evidence from patients; and What additional support and training patient organizations and experts want from NICE’s public involvement team. CONCLUSIONS: We concluded that not only patients need training, but also everybody included in the NICE medicines HTA process. Over time we have gradually added to our training portfolio for patient organizations and experts as well as NICE staff and independent committees. We now run patient involvement as part of the induction program for all staff, technical staff, medicines committee chairs, and NICE committees and lay members. We also provide monthly training for patient organizations and patient experts.