UK Health Data Research Alliance expands

Eight leading health organisations, research institutes and charities – including BHP founding member University Hospitals Birmingham NHS Foundation Trust (UHB) – have joined the UK Health Data Research Alliance to accelerate progress in medicine and health. Other new members are UK Biobank, UK Cystic Fibrosis Registry, The Brain Tumour Charity, National Institute for Health Research (NIHR) BioResource, and Healthcare Quality Improvement Partnership (HQIP).

Established in February 2019 by Health Data Research UK with ten founding members, the Alliance will help researchers to answer some of the most difficult questions and address the most important health challenges faced in the UK through better access to health data.

Representing the first NHS trusts and medical research charities to join the Alliance, these new members offer an exceptional opportunity to provide access to rich and diverse health data for research and innovation.

Research based on data that reflects diversity of culture, healthcare conditions and aspects such as race, ethnicity, gender and age improves the ability to generalise results and enables new discoveries and understanding about disease. In turn this provides fairer and more equal access to the latest treatments and medical technologies, benefiting as many people across the UK as possible.

      • The three trusts, including UHB, provide healthcare general and specialist services to some of the most diverse communities in the UK
      • UK Biobank follows the health and wellbeing of 500,000 volunteer participants and provides health information, which does not identify them, to approved researchers in the UK and overseas
      • The UK Cystic Fibrosis Registry records health data on people with cystic fibrosis (CF) in England, Wales, Scotland and Northern Ireland, who have consented to have their data used for research
      • The Brain Tumour Charity has a patient-led data resource, BRIAN, which brings together a patient’s clinical record with patient-reported information to help identify gaps in clinical care and provide researchers with easy access to data to help accelerate progress towards a cure for brain tumours
      • The NIHR BioResource represents one of the largest rare disease data resources of its kind, providing anonymised data for researchers to accelerate knowledge and treatments for rare diseases.
      • The HQIP is the organisation responsible for the largest programme of clinical audit in the UK.

The UK Health Data Research Alliance develops and co-ordinates the adoption of tools, techniques, conventions, technologies, and designs that enable the use of health data in a trustworthy and ethical way for research and innovation.

Its members formulate best practice and standards in areas such as privacy, transparency, public engagement, inclusivity and governance to ensure that health data is shared and used responsibly by researchers and innovators. Any requests to access data held by Alliance members for research and innovation will continue to go through their existing protocols to ensure strict security and data privacy.

Professor Simon Ball, UHB Executive Medical Director, said: “We are pleased to be joining the UK Health Data Research Alliance, and look forward to working in partnership with the other Alliance members to help improve patient care. As a founder partner of Health Data Research UK, we have worked with partner organisations to consider how health data can support major developments in healthcare. By collaborating across a wide range of organisations, the Alliance promises to build on the success of Health Data Research UK.”

Professor Andrew Morris, Director of Health Data Research UK and Chair of the Alliance Board, said: “We warmly welcome these new members to join the UK Health Data Research Alliance.  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.”