Expert reaction to the life sciences sector deal published by the government as part of its modern industrial strategy.
Prof Sir Robert Lechler PMedSci, President of the Academy of Medical Sciences, said:
“I am pleased to see that the new Life Sciences Sector Deal largely supports the conclusions in the Academy’s latest report on the future use of patient data by new technologies. This project engaged the public, patients and healthcare professionals and highlights the importance of building trust and confidence around the use of patient data by health technologies.
“Patient data can be used to benefit patients, the NHS and wider society by supporting individual care, health services and planning and research and innovation.
“I welcome the Sector Deal’s proposal to develop a framework to guide trustworthy and safe access to patient data so that the NHS can share in the benefits of making patient data available, and encourage the Government to align thus with the Academy’s principles on how patient data should be used in line with public and patient expectations.”
“Our principles recommend establishing robust and transparent data access agreements that can help to ensure that the benefits of using patient data are shared with the NHS. I hope that the Sector Deal’s proposal to introduce model agreements that can guide the NHS, developers and researchers in this area reflect the values and expectations of wider society.”
Aisling Burnand, Chief Executive of the Association of Medical Research Charities (AMRC), said:
“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 fundamental in improving survival rates in the longer term.”