Involving patients is a core principle which governs the work of the National Institute for Health and Care Excellence (NICE). To improve how patient evidence is identified and considered in health technology assessments (HTAs), NICE worked with patient organizations to review existing HTA methods and co-designed proposals for change.

A working group, including six patient organizations, oversaw the project, identifying and co-designing options for improvement. We held a stakeholder event with twenty-two patient organizations to identify themes for improving how we find and use patient evidence. We then ran an online quantitative and qualitative survey for targeted consultation with patient organizations to capture broader views.

The fifty-two people who responded to the consultation made the following suggestions:

1. (i) Provide information about uncertainties that patient evidence might help to address;

2. (ii) Explore the role of real-world evidence in patient involvement;

3. (iii) Provide training and support to patient organizations;

4. (iv) Create inclusive committee cultures; and

5. (v) Include additional touchpoints during HTAs to incorporate patient evidence.

This work identified improvements in seeking and incorporating patient evidence into HTA processes. Precise guidance for patient organizations will help them to submit evidence that will make the most impact. This is particularly important when assessing disruptive technologies where there are likely to be greater uncertainties and cost pressures. The results of this work will be developed into formal options for NICE to consider when updating its methods guides.