Published: 16 July 2024

The AMRC has today published a briefing which highlights the huge potential that unlocking the power of NHS patient data has to transform care and research, and to make the UK one of the best places in the world to innovate. 

The briefing makes clear, however, that as it stands the system is not working. We call on the government to do two things in parallel:

1. Design an ambitious new strategy to make proper use of patient data, realising its value for the benefit of patients and the NHS. This will need careful deliberation and wide engagement, and we urge the Government to take time to get it right. This is too important to fail.
   
   
2. Address several urgent priorities now:

• • Prioritise ongoing engagement with the public
  • Review and reform the opt-out model 
  • Unlock access to primary care data for research
  • Resource Secure Data Environments (SDEs) to speed up access
  • Maximise use of patient data for clinical trial recruitment

Read the briefing

We hope this briefing will contribute usefully to the new Government’s thinking and we will continue to push for charities to be part of the conversation in this important area. 

The briefing is part of a new 'Manifesto in focus' series that expands on some of the topics covered in our manifesto, including recruitment to clinical research, the Charity Research Support Fund (CRSF) and charity investment in infrastructure.

Visit our Election Hub to find out more.