Involving patients in the health technology assessment (HTA) lifecycle is a core principle at the National Institute for Health and Care Excellence (NICE) that helps build public confidence in healthcare decision-making. The last stage in this lifecycle is an appeal whereby stakeholders, including patient organizations, can appeal against the HTA committee’s decision based on two specific grounds: (i) the committee has failed to act fairly or NICE has exceeded its powers; and (ii) the recommendation is unreasonable considering the evidence submitted to NICE. Improving patient involvement in the appeals process was identified as a key area from consultative work undertaken with patient organizations in 2019.

In September 2020, surveys were sent to patient organizations for their feedback. The organizations received a survey tailored to their circumstances in relation to the following four outcomes.

1. (i) An appeal was lodged that: (a) resulted in an appeal hearing; or (b) did not result in an appeal hearing.

2. (ii) An appeal was not lodged but the organization had received: (a) negative guidance; or (b) ‘optimized’ guidance.

Sixteen responses were received across the four surveys. The key findings in priority order were as follows.

1. (i) The legalist nature of appeal hearings is off-putting.

2. (ii) The online appeals guide and template letter are not easy to use.

3. (iii) Organizations would like more information on appeal hearings and timelines.

4. (iv) Organizations would like patient-friendly materials and training on par with the support they receive for other HTA participation.

As a result of these findings, we are iteratively developing materials to support patient organizations, including:

• • a glossary;

• • a redesigned appeals web page with clearer timelines and a template letter;

• • a ‘Frequently Asked Questions’ document specifically for patient organizations; and

• • a video podcast from a lay appeals panel Chair explaining appeals in a patient-friendly way.

We are also including a section on appeals in our introductory training for all patient organizations participating in medicines HTAs.