Involving patients and community organizations in the health technology assessment (HTA) lifecycle is a core principle at the National Institute for Health and Care Excellence (NICE) and helps build public confidence in the healthcare decision-making. From 2019 to2021 NICE assessed a HIV-1 medicine for the first time. This presented new opportunities and challenges for engaging with Human Immunodeficiency Virus (HIV) community organizations who hadn’t participated in a NICE HTA before. To understand their experience, we collected feedback on the impact and experience of community involvement throughout the assessment.

We used a mixed-method approach using a survey and qualitative feedback from the committee lay member, community experts, and the community organizations. An impact survey was sent to key committee members, the NICE technical team and Associate Director. It included Likert scale questions and open text boxes to capture both quantitative and qualitative data. Additionally, qualitative feedback was gathered throughout the assessment’s lifecycle from the NICE team and the community stakeholders.

Results from the impact survey showed that the community input: had significant impact on the evaluation (100% (n=5)); helped interpret the other evidence and information (80% (n=4)); provided new evidence (60% (n=3)); and, was consistent with the other evidence (40% (n=2)). Examples of impact included highlighting the population heterogeneity, stigma, side effects and the effects of frequent clinic attendance. The key feedback from the qualitative data from the community organizations and experts in terms of their experience were: early support and support throughout from the NICE team; NICE’s flexibility in involving them; and, meaningful inclusion of their evidence in the committee slides.

Both the NICE committee and the community stakeholders recognized that the community input was valued and had an impact on the decision-making. To ensure meaningful community engagement, support and flexibility from NICE were required throughout the assessment. This level of engagement will be adopted in future for community organizations new to medicines HTAs at NICE.