SHCA and Genetic Alliance UK publish a progress report on patient involvement in NICE decision-making

The SHCA and Genetic Alliance UK have published a progress report on patient involvement in NICE decision-making. The report follows on from our 2023 report, Strengthening the patient voice in NICE’s decision-making, which set out our members’ experiences of working with NICE across the HTA process – looking at what works well and where patient groups, particularly smaller organisations representing patients with ultra rare conditions, need further support.

This report sets out the progress made against our 2023 recommendations, outlining where NICE has strengthened patient involvement based on feedback from our members. It also describes where our members feel more progress is needed to deliver on NICE’s vision “to have a best-practice approach to involvement and engagement, to improve the impact of our guidance and ensure the best care for people and communities.

 The report focuses on the following themes:

• SHCA members’ experiences working with the NICE Patient Involvement Programme team
• Increasing support for patients in providing written submissions
• Ensuring NICE committee meetings are made more accessible to rare disease patient groups

You can read the full report here.

The SHCA and Genetic Alliance UK welcomed NICE’s new strategy for involving people and communities and looks forward to continuing to work with NICE in considering how the recommendations made in this report can be implemented.