Immunodeficiency UK was pleased to contribute to the Specialised Healthcare Alliance (SHCA) progress report, "Strengthening the patient voice in NICE's decision-making", which has now been published and co-badged by Genetic Alliance UK. 

This new report reviews the progress made against the recommendations from SHCA's 2023 publication, which aimed to ensure that the voices and lived experiences of patients are better embedded into NICE's processes. 

We were proud to share our insights as part of this important work, representing the perspectives of people affected by primary and secondary immunodeficiency. Strengthening patient involvement in decision-making is vital to achieving better outcomes for patients and we are committed to ensuring that people with immunodeficiency have a voice in the decisions that affect their care. 

The SHCA recommends the following as immediate areas of focus: 

  • NICE should continue to reflect on how the Patient Involvement Programme (PIP) team can provide more proactive and tailored support to smaller patient groups, who have little or no experience of the Health Technology assessment (HTA) process.  
  • Communication on how patient evidence forms an essential part of the decision-making process should be strengthened, so that patient groups understand how the time they invest in HTA supports the work of NICE committees.  
  • NICE should consider how the ways in which patient representatives provide evidence to committees can be diversified, to support them to handle the emotional impact of contributing to committee meetings, and the impact on their day-to-day lives, given the sacrifices that need to be made to attend them. 

The full report is available to read here: 

Progress report – Strengthening the patient voice in NICE's decision-making 

SHCA will now share it with the NICE patient involvement team and the Department of Health and Social Care's rare conditions policy team, with a view to encouraging future work on strengthening patient involvement with NICE as part of the UK Rare Diseases Framework. 

Posted October 2025