New landscaping report sets out opportunities and challenges in improving access to UK health data

With an in-depth mapping of the organisations and technical architecture already in place, the report sets out the opportunities and challenges ahead in bringing the UK’s new Health Data Research Service (HDRS) to life.

The review maps the many different formats of data held across different types of repositories, and the data layers and processes that exist from clinical settings to interfaces which researchers can access. It looks at both technical and organisational constraints, setting out potential options for HDRS to approach this landscape in order to simplify access for researchers and speed up medical research while ensuring patient privacy.

Commissioned by Wellcome, the independent report has been authored by a consortium of health data, policy and information governance experts led by Emrys Health. The review has been informed by extensive interviews, workshops and written evidence from those involved in managing health data for research across the four nations of the UK.

With financial backing from the UK government and Wellcome, HDRS is being set up to simplify the process for approved researchers to analyse the UK’s health data at scale and deliver new trials and treatments for patients. The UK has world-class health data, set in one of the world’s largest publicly funded health systems. But there are technical and organisational barriers to maximising the benefits this data can bring for medical research. 

The authors write that health data is too often “trapped” in systems that are difficult to access. Researchers struggle to join up data that is hosted in separate organisations or geographies, with data formats and processes varying even within NHS trusts. Scientists’ time is wasted due to poorly linked infrastructure and unpredictable processes, while the lack of a joined-up system also makes it harder for hospitals to find and recruit the right patients as trial participants. This fragmentation slows down clinical trials and reduces R&D investment.

Shining a spotlight on technical architecture, the report builds on previous work which has set the scene for the creation of HDRS and efforts to improve the environment for clinical trials in the UK, such as the Sudlow Review, Goldacre Review, and O’Shaughnessy Review.

John Chevers, technology lead at Wellcome, said:

“We’ve supported the creation of the Health Data Research Service because we know just how much incredible potential there is in UK health data to unlock new discoveries and treatments for disease. There is already great work on this in areas across the UK, but with greater ability to analyse it at scale, our health data could help us learn so much more about health in the UK, and also help us to make breakthroughs that can benefit people around the world.

“We commissioned this independent report to help inform the Health Data Research Service as they start to make decisions about how best to go about this. It is a comprehensive and highly practical analysis that will be a reference work for UK health data research for a long time to come.”

Will Browne, Director of Emrys Health, said: 

“The UK has a long history as a leader in health research, yet we face fierce global competition. Our report highlights the unique capabilities we have today, while identifying the missing pieces that limit our potential. A high-performing health data research service will need strong national standards, simplified data integration, and streamlined data access. This is much easier to say than to deliver, but we cannot continue to allow systemic friction to stand in the way of breakthroughs in patient care.”

Mallory Durran, Director of Applied Research at Nesta, said: 

"The UK’s rich health data is central to developing the next generation of medical treatments. Funding, governance, and technology must scale securely to realise the potential of our research talent. The Health Data Research Service provides a unique opportunity to advance the UK’s leadership in life sciences, translating data-driven innovation directly into improved patient care, from disease detection and prevention to developing clinical trials for treatment.”

Read the report: http://wellcomeopenresearch.org/documents/11-291