Eight leading health organisations, including three of the UK’s largest trusts, have joined the UK Health Data Research Alliance to explore how data can be better used to improve patient care
Launched in December 2018, the Alliance aims to make health data more accessible and improve data quality in order to build a more innovative and efficient health and care system.
NHS Digital and Health Data Research UK were the first partners to join.
Now Barts Health, University Hospitals Birmingham and Nottingham University Hospitals have followed suit, alongside the UK Biobank, National Institute for Health Research (NIHR) BioResource, Healthcare Quality Improvement Partnership (HQIP), and charities Cystic Fibrosis Trust and The Brain Tumour Charity.
The new members – the first NHS trusts and research charities to join the Alliance – will provide opportunity to access rich and diverse health data to improve research and innovation.
Professor Andrew Morris, director of Health Data Research UK and chair of the Alliance Board, said: “Each brings high value datasets as well as new approaches to developing tools and techniques to use diverse health data at scale to make improvements to people’s lives through research.”
Professor Ian Hall, director of the NIHR Nottingham Biomedical Research Centre based at Nottingham University Hospitals, added: “The UK has some of the best datasets in the world, which can be used to improve clinical care for patients and to facilitate development of new treatments.
“Being involved with the research alliance should improve our ability to use these data assets, and will bring benefits both to our patients and to our research team.”
The Alliance will look into the best ways to design, use, collect, manage and analyse health data in a responsible way for clinical trials, medical research, and innovation.
Currently, only a fraction of NHS and research data is easily accessible to researchers.
Targets for the Alliance include building a set of governance policies and standards to open up data, while ensuring that it is safe, secure and only shared where there is an appropriate legal basis.
Alwen Williams, group chief executive at Barts Health NHS Trust, said: “There is much to be gained by making our varied health data more accessible to research, so it is vital that we all support the exciting opportunities that this creates to improve the health and opportunities of our communities.”
Rebecca Cosgriff, director of data & quality improvement at the Cystic Fibrosis Trust, said: “Being part of the Alliance is a great opportunity to demonstrate our long-standing commitment to transparency, collaboration and innovation when it comes to maximising the potential of donated data.”
The launch of the Alliance last year followed six sites across the UK being given a share of £54m funding to address challenging healthcare issues through the use of data science.
The sites will work as foundation partners with Health Data Research UK.