AMRC's response to the publication of the Government's response to the National Data Guardian's Review of Data Security, Consent and Opt-outs

Published: 12 July 2017

Commenting on the publication of the Government’s response to the National Data Guardian for Health and Care Review of Data Security, Consent and Opt-outs, Aisling Burnand MBE, chief executive of the Association of Medical Research Charities said:

“Tremendous and important opportunities can be realised through the responsible use of patient data for advancing medical research and in improving care for patients.

“Health information enables researchers to transform and save lives by identifying the causes of diseases and ill-health and developing new treatments. Joining up patient data across the NHS can deliver safer and more effective care and services for patients.

“The failure to record, link and share data in the NHS is compromising the care and safety of today’s patients and our ability to conduct world-class research. Progress on creating a truly digital and 21st century NHS has been far too slow and patient care and research has suffered as a result of this.

“Public confidence and trust in the system to responsibly manage patient data is key, and we welcome the Government's focus on security and informed choice in its response to the National Data Guardian’s review. Government must now take action to deliver on these commitments and the implementation plan it has set out. Crucially, further delays must be avoided as they will only serve to harm the care of patients.

“Whilst there will be complexities and challenges in making use of patient data a reality, by working with technology and engaging stakeholders we believe these complexities can be managed by Government and overcome.”