Involving patients in the health technology assessment (HTA) lifecycle is a core principle at the National Institute for Health and Care Excellence (NICE). We include both patient organizations and patient experts, which helps build public confidence in healthcare decision-making. We continually work with patient experts to improve their experience and ability to participate by seeking patient expert feedback after every committee meeting.

We sent patient experts an anonymous experience survey containing a five-point Likert scale and open text boxes to capture qualitative data. The survey covered their overall experience, interaction with the committee Chair, and the support they received from both NICE and the Public Involvement Programme (PIP).

In the 2019 to 2020 period we sent out 59 questionnaires and received 29 responses (47%), all of which were from medicines HTA committee participants. In the 2020 to 2021 period we sent out 120 questionnaires and received 65 responses (54%), of which 64 were from patient experts who attended medicines HTAs and one was from a medical devices HTA committee participant.

Good or excellent experiences were reported by 90 percent of patient experts. The four main success factors noted were: good support before meetings; being welcomed and respected; well organized meetings; and patient expert input being valued. Areas for further improvement included: providing better briefing before meetings; allowing more time to review documents; providing more technical support; and giving more consideration to the opinions of patient experts.

As a result of the feedback received, the PIP now holds monthly group briefing meetings for patient experts. We also publish the anonymized feedback from the patient experts quarterly in a newsletter for committee members and share the data with internal NICE teams. Additionally, NICE aims to: send committee papers out earlier; have the option of holding a technical engagement call before committee meetings; and develop a feedback mechanism to ascertain the impact of patient input.