Presentation (CTI)

OBJECTIVES: Patient involvement is central to NICE’s decision-making processes and underpinned by NICE’s Working alongside people and communities strategy. Whilst people report feeling valued and heard, it can be unclear exactly how their contributions influence the decision-making process. There is also no single definition of the impact patients can have throughout the HTA lifecycle at NICE, resulting in a limited understanding which makes measurement difficult and inconsistent.
METHODS: A definition was developed using a literature review of patient involvement, HTA methodology, and a stakeholder focus group. This definition comprised of 21 statements with an accompanying example of where patients could have an impact at NICE.
We consulted on the definition using a survey with a 5-point Likert scale and open-ended questions. This was sent to NICE staff, NICE committees, previous patient contributors, and patient organizations to test if the definition was accurate, acceptable, and to identify additional areas of impact.
RESULTS: The consultation survey received 104 responses, 98 of which had direct experience of developing NICE guidance. This included committee chairs (n=8), committee members (n=38), patient representatives (n=14), NICE staff (n=31), and patient organization representatives (n=6).
19 of the 21 statements were either strongly agreed or agreed with by over 75 percent of the respondents. The other 2 statements received 63% in agreement and 71% in agreement. Thematic analysis identified whilst there was an overall agreement with the standards, there was a need for clearer examples linked to guidance development methodology.
CONCLUSIONS: The definition of patient impact throughout the guidance development process was largely accepted by stakeholders. Some statements required additional consultation, with the final definition published in April 2026.
This definition will enable NICE staff and HTA committees to fully understand where patient involvement and evidence has the most impact, and enable consistent measurement, reporting, and feedback.