The National Institute of Health and Care Excellence (NICE) assesses the efficacy and safety of interventional procedures for use in the National Health Service (NHS). Since 2006, NICE's Public Involvement Programme (PIP) has obtained ‘patient commentary’ to inform committee decisions, using a questionnaire asking patients about their experience of the procedure including benefits, disadvantages and side effects. Commentary is considered by the committee alongside other evidence. The PIP has piloted a project to: capture the impact of the patient commentary on the committee's decision-making; explore patterns of impact; and identify criteria that indicate when patient commentary may not be required.

The pilot included all interventional procedures guidance started between February 2016 and February 2017. Committee members’ views were captured using a form completed whenever patient commentary was considered. Responses were anonymized, entered into an electronic system, analyzed, and correlated against ‘committee comments’ in the published guidance. After twelve months, there was an unrepresentatively narrow spread of conditions, and most topics were updating previously published guidance rather than novel topics. The pilot was therefore extended by six months.

Patient commentary commonly had an impact on decision-making; however, no discernible patterns have yet been identified, nor criteria for when it may not be required. Key findings were: (i) patient commentary is equally useful for guidance updates as novel guidance, and (ii) interpretation and assessment of ‘impact’ varied across committee members but the majority agreed it reinforced the other evidence.

Patient commentary has a measurable impact on committee decision-making. Very occasionally it provides new evidence and routinely provides reassurance that the published evidence is substantiated by real-world patient opinion. Measuring the impact of commentary seems to have raised its profile, with more committee comments about patient issues included in guidance during the pilot than in preceding years. The project needs to be extended to identify which procedures are least likely to benefit from patient commentary and why.