The COVID-19 pandemic and lockdown measures in the United Kingdom resulted in significant challenges and created opportunities for innovation to keep patients at the heart of HTA. The introduction of the Coronavirus Act 2020 and the associated public health guidance meant that NICE's conventional HTA methods were no longer feasible. NICE introduced rapid, innovative updates to patient and public involvement (PPI), decision-making meetings, and consultations to harness the expertise of patients and the public to ensure guidance addressed the expected concerns and identified barriers which could impact access. This article describes the PPI support for NICE's rapid shift to virtual meetings and virtual engagement. We utilize the authors' experience and patient and public contributor feedback to understand the experience of participating in a virtual setting and identify four themes: accessibility; inclusivity; transparency; and intrapersonal relationships and committee dynamics. The article also considers how patient representatives participated in, and facilitated, the development of guidance for a hypothetical technology to keep patients and the public at the heart of expedited and novel HTA processes to identify and understand the expected patient concerns and potential barriers for when a technology would be introduced.

The National Institute for Health and Care Excellence (NICE) worked with patients and staff from six patient organizations to review existing health technology assessment (HTA) methods and coproduce proposals to improve the following: patient involvement, how patient evidence is identified and considered by committees, and the support offered to patient stakeholders. This engagement identified important factors that HTA bodies need to understand to enable meaningful patient and public involvement (PPI), such as having clearly documented processes, appropriate evidence submission processes, transparent decisions, and suitable support. This work demonstrated the benefits of HTA bodies working collaboratively with patient stakeholders to improve PPI. By doing so, HTA bodies can increase their knowledge and understanding of the barriers faced by patient stakeholders to develop appropriate solutions to remove them. The coproduction approach improved stakeholder engagement methods, provided a better analysis of data, supported the development of meaningful conclusions, and improved stakeholder relationships.

IntroductionInvolving patients is a core principle which governs the work of the National Institute for Health and Care Excellence (NICE). To improve how patient evidence is identified and considered in health technology assessments (HTAs), NICE worked with patient organizations to review existing HTA methods and co-designed proposals for change.MethodsA working group, including six patient organizations, oversaw the project, identifying and co-designing options for improvement. We held a stakeholder event with twenty-two patient organizations to identify themes for improving how we find and use patient evidence. We then ran an online quantitative and qualitative survey for targeted consultation with patient organizations to capture broader views.ResultsThe fifty-two people who responded to the consultation made the following suggestions: (i)Provide information about uncertainties that patient evidence might help to address;(ii)Explore the role of real-world evidence in patient involvement;(iii)Provide training and support to patient organizations;(iv)Create inclusive committee cultures; and(v)Include additional touchpoints during HTAs to incorporate patient evidence.ConclusionsThis work identified improvements in seeking and incorporating patient evidence into HTA processes. Precise guidance for patient organizations will help them to submit evidence that will make the most impact. This is particularly important when assessing disruptive technologies where there are likely to be greater uncertainties and cost pressures. The results of this work will be developed into formal options for NICE to consider when updating its methods guides.