Three of the largest NHS trusts in England and five research institutes and charities are joining the UK Health Data Research Alliance, which was launched earlier this year and is inspired by the Global Alliance for Genomics and Health and the Human Genome Project.

Barts Health, University Hospitals Birmingham and Nottingham University Hospitals will work with partner organisations to improve access to datasets and accelerate progress in science and healthcare. 

The other new members are: the UK Biobank, Cystic Fibrosis Trust, Brain Tumour Charity, NIHR BioResource and Healthcare Quality Improvement Partnership (HQIP).

WHY IT MATTERS

According to NHS Digital, one of two organisations to first join the alliance, along with the Health Data Research UK (HDR UK) institute, researchers only have access to a “fraction” of NHS and research data at the moment.

The initiative therefore aims to “coordinate identification and adoption of standardised tools, techniques, conventions and technologies” that enable the ethical use of health and care data for research and innovation purposes, HDR UK said in the launch announcement.

Organisations are expected to work together and formulate best practice and standards in areas including privacy, transparency and inclusivity.

“Each of the new members 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,” said Professor Andrew Morris, HDR UK director, who was appointed to the role in 2017.

ON THE RECORD

“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,” said Alwen Williams, group chief executive at Barts Health NHS Trust.

Jane Ingham, chief executive of HQIP, added: “This is a very exciting development for the health research community and we’re delighted to add our unique perspective as the organisation responsible for the largest programme of clinical audit in the UK.

“The Alliance mirrors our commitment to the use of data to measure and improve health services and the patient experience. We look forward to working with Alliance members to support those who use data for improvement and to strengthen data-sharing guidance and protocols.”