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Welcoming new health data research hubs
Tara Donnelly and Katie Farrington from NHSX explain how research partnerships can save and improve lives as long as they are underpinned by robust and ethical frameworks that will maintain public trust in rapidly developing technologies.
12 September 2019
NHSX warmly welcomes Health Data Research UK’s announcement of seven new research hubs focussed on improving the lives of people with specific diseases, such as cancer, Crohn’s disease and asthma.
Patients, researchers and clinicians will work with companies in each hub from October to support research that aims to improve understanding of disease, enable new health discoveries and speed up the process for getting pioneering treatments to people across the UK.
Research partnerships that bring the NHS together with a wealth of expertise and untapped resource – whether from charities, academics or commercial companies – can speed up research for new medicines and treatments, support more timely diagnoses, and ultimately help save lives.
It is right that we manage access to any NHS information very carefully. It is time for the NHS to actively own and drive this agenda. We need to control the design of research collaborations to make sure that benefits are returned to the NHS and the UK public.
And we need to earn the public’s trust that we can do this well. That involves including patients and the public in decisions about how data will be used and accessed.
That’s why we are working hard across the system to develop the right ethical frameworks and guidance for the NHS that is based on NHS values.
Collaborations need to benefit everyone involved – patient lives are at stake.
For example, months before we announced our intention to host a new artificial intelligence lab, our code of conduct for artificial intelligence and other data-driven technologies made clear our expectation that technology companies meet a gold-standard set of principles to protect patient data.
We are the first country in the world to do this and our code of conduct has been drawn up with the help of industry, academics and patient groups and will be continually reviewed and evolved as the landscape changes.
NHS England and the independent group Understanding Patient Data (hosted by the Wellcome Trust) are currently undertaking citizen’s juries and wider deliberation on the question: “what constitutes a fair partnership between the NHS and researchers, charities and industry on uses of NHS data (patient and operational)?”. Read more about citizen juries here.
By testing different commercial models against the principles on which our citizens are not prepared to compromise, we hope to reach a consensus on what good looks like and how best we achieve the promised benefits.
Our shared goal, working with partners across the healthcare system, is to improve outcomes for patients, make the NHS more efficient and cost effective, and contribute to making the UK home to the latest data-driven scientific advances in healthcare.
NHSX is committed to hosting a Centre of Expertise, which will provide specialist commercial and legal advice to NHS organisations entering data agreements. This Centre will develop standard contracts and guidance, and ensure that the advantages of scale in the NHS can deliver benefits for patients and the NHS.
Better use of data between the NHS and others has the potential to transform healthcare. NHS and care organisations have an obligation to protect patient data, but in my view, they also have the obligation to make best use of it. Collaborations need to benefit everyone involved – patient lives are at stake.
We are committed to making the NHS and the UK world leaders in data driven healthcare and applaud today’s news that will be part of turning this ambition into reality.