Published: 5 December 2018

The government has today announced the Life Sciences Sector Deal 2. Aisling Burnand MBE, Chief Executive of the Association of Medical Research Charities (AMRC) commented: 

 “We are reassured to see that the Life Sciences Sector Deal not only acknowledges the need for improved use of high-quality healthcare data but also that charity supported patient registries are already a vital and growing part of the UK’s unique health data landscape.  

We also know that in any conversation about health data the public must be brought along the same journey as researchers and health care professionals to understand how and why their data might be used. This is not a journey that government can travel alone.  

AMRC, on behalf of our members, looks forward to playing a key role in driving forward the need for a public dialogue to make sure data is used not only effectively but appropriately to save lives. It is vital there is are strong ethical, IP and regulatory frameworks that guide data decision making for everyone. 

This Sector Deal could be game changing both in its recognition of the importance of health data and in the powerful step it has taken to accelerate early diagnosis of conditions such as cancer, heart disease and Alzheimer’s. Catching these life-shortening and life-limiting conditions early could be fundamental in improving survival rates in the longer term.