Former Government Chief Scientific Adviser Sir has called for a
‘National Data Trust' to enable the NHS to safely share patient
data with trusted researchers to accelerate healthcare
discoveries.
Sir Patrick, now a Institute for Global Change
(TBI) Strategic Counsellor, has written the foreword to A New
National Purpose: Harnessing Data for Health published today
ahead of the next Future of Britain conference on 9 July. In the
paper, authors Benedict Macon-Cooney, Axel Heitmueller, Darcy
Ward, Luke Stanley and Henry Li set out how NHS data could be
shared safely and securely.
Medical researchers from academic, third sector, commercial and
NHS organisations would be able to identify new treatments and
diagnostics at pace which could provide better, potentially
life-saving patient care. For example, rapid and streamlined
access to de-identified NHS patient data enabled the RECOVERY
trial to significantly accelerate the discovery of dexamethasone
as a life-saving Covid-19 treatment. The National Data Trust
would unlock this pace of innovation as standard, enabling safe
and responsible health data sharing to accelerate medical
breakthroughs.
Making data more easily available would attract new investment in
the UK's healthcare and biotechnology sectors. TBI estimates that
the National Data Trust has the potential to generate £2 billion
for the NHS and wider economy.
The Data Trust would be owned for the nation – by the Government
and the NHS – to ensure that benefits can flow back to support
NHS patient care.
Sir said:
“We are at a pivotal moment where technology stands to
revolutionise healthcare, drive economic growth and improve the
lives of citizens. The UK has unique strengths to lead this
revolution, but doing so requires us to be bold and imaginative.
The establishment of a National Data Trust would unlock these
opportunities, providing a trusted and secure platform for us to
harness data as a healthcare asset.
“Giving access to trusted researchers would enhance the discovery
and implementation of better health care and a more sustainable
model of delivery. This is essential if we are to tackle the
complex challenges facing our society and deliver better outcomes
for citizens.
“This proposal also puts public trust and benefit at its heart,
with appropriate safeguards in place to ensure the public have
control over their data and how it is used, and that commercial
interests never take precedence over the public good.
“The National Data Trust is a critical first step. Through
curiosity, collaboration and continuous learning, we can make the
UK a world-leader in delivering cutting-edge care and pioneering
new technologies for diagnosis, disease prevention and
treatment.”
Henry Li, Senior Policy Advisor at TBI and lead author of
the paper, said:
“The NHS already gives researchers access to anonymised NHS data
but there is currently too much variation in how this is
achieved. This means patients miss out on potential new
treatments and diagnostics and the NHS misses out on potentially
billions in revenue.
“Our proposal for a National Data Trust would make all the data
accessible in one place in a safe and secure way. This would
support researchers from academia and commercial organisations to
properly harness advances powered by the advent of AI,
biotechnology and computing.
“It would be a critical step towards unlocking the transformative
potential of the UK's health data to improve health outcomes,
drive scientific discovery and spur economic growth.”
The National Data Trust would have majority and controlling
ownership by the Government and the NHS.
Further information
‘A New National Purpose:
Harnessing Data for Health' is being published as part
of the Institute's ‘Future of Britain' programme, which sets out
a policy agenda for a new era of invention and innovation. This
series focuses on how to deliver radical-yet-practical solutions
– concrete plans to reimagine the state for the 21st century –
with technology as the driving force.
