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Date: 22 August 2019

Time: 16:21

image: HRDUK

UK Health Data Research Alliance expands

Story posted/last updated: 02 August 2019

Eight leading health organisations, research institutes and charities, including three of the UK’s largest NHS trusts - Barts Health NHS Trust (BH), University Hospitals Birmingham NHS Foundation Trust (UHB) and Nottingham University Hospitals NHS Trust (NUH) - have announced today that they are joining 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.

  • BH, UHB and NUH 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."

Alwen Williams, Group Chief Executive at BH, said: "I am delighted to represent Barts Health as a member of the Board for The UK Health Data Research Alliance. 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."

Professor Ian Hall, Director of the NIHR Nottingham Biomedical Research Centre based at NUH said: "I am delighted that NUH, which hosts the NIHR Nottingham Biomedical Research Centre, has agreed to join this initiative.  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."

Sarah Lindsell, Chief Executive of The Brain Tumour Charity said: "We are very excited and honoured to be one of the first charities to join the UK Health Data Research Alliance. This partnership complements our pioneering BRIAN data bank which collects and shares information about people’s diagnoses, tumour types, treatment, side effects and impact on their quality of life."

Director of Data & Quality Improvement at the Cystic Fibrosis Trust, Rebecca Cosgriff said, "The Cystic Fibrosis Trust is delighted to join the UK Health Data Research Alliance. The UK Cystic Fibrosis Registry is a world leading research resource, thanks to the support of people with cystic fibrosis, their families, and clinical teams. 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.”

Jane Ingham, Chief Executive, HQIP, said: “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."

Professor John Bradley, Director NIHR Cambridge Biomedical Research Centre, said: "The NIHR BioResource is delighted to be joining the UK Health Data Research Alliance. Integrating healthcare data from the NHS with genomic and health and lifestyle data is central to our mission to improve health by engaging and involving patients and the public in research. We look forward to building on the successful partnerships we have already established with Health Data Research UK."

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