The National Institute for Health and Care Excellence (NICE) strategic review of its public involvement offer included a survey with stakeholders to explore how NICE can continue to deliver high quality, meaningful public involvement in a rapidly-changing environment.

NICE staff, committee lay members, and an external academic ran the project and designed an online survey. The survey was open for two weeks. A purposive sample, recruited through various communication channels, was invited to participate. The sample comprised: (i) external individuals involved in NICE work, (ii) NICE committee and Board members, (iii) NICE staff. The survey included qualitative and quantitative questions, covering the ‘who’, ‘when’, ‘how’ and ‘what’ of NICE's public involvement approaches.

The survey yielded 684 responses, which were stratified by stakeholder type. Overall the responses indicated that: (i) the suggested stages for involvement are all important, but on a sliding scale: ‘defining outcomes guidance should consider’ is most important, and ‘helping committee chair recruitment’ is least important; (ii) different perspectives are needed such as individual treatment or care decisions should incorporate views of directly affected people, and population-based public health decisions need the views of citizens. Quality improvement suggestions included: (i) seeking feedback on people's experiences of care, using clear, structured approaches including focus groups, interviews, surveys, social media; (ii) increasing communications about NICE's work, specifically about involvement opportunities and use of patient evidence; (iii) using data on people's experiences equally with academic evidence; (iv) providing education and training on involvement to NICE staff and the general public; and, (v) partnership working with other organizations to enhance engagement. A focus group with key stakeholders used the survey findings to shape the subsequent public consultation document.

There was consensus that public involvement is necessary throughout guidance development; however, the type of person involved and nature of participation should vary across the development stages. Project challenges included managing diametrically opposing views, and the associated implications for engagement.