UK Health Data Research Alliance expands to increase diversity of health data for research and innovation
Eight leading health organisations, research institutes and charities, including three of the UK’s largest NHS trusts – Barts Health, University Hospitals Birmingham and Nottingham University Hospitals – 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, the Cystic Fibrosis Trust, the Brain Tumour Charity, NIHR BioResource, and Healthcare Quality Improvement Partnership (HQIP).
Established in February 2019 by Health Data Research UK with 10 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.
- Barts Health, University Hospitals Birmingham and Nottingham University Hospitals provide healthcare general and specialist services to some of the most diverse communities in the UK
- UK Biobank follows the health and well-being 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 National Institute for Health Research (NIHR) BioResource represents one of the largest data resources of its kind, providing anonymised data and samples for researchers to accelerate knowledge and treatments for rare and common diseases
- The Healthcare Quality Improvement Partnership (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 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 Barts Health NHS Trust, 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 Simon Ball, University Hospitals Birmingham 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 Ian Hall, Director of the NIHR Nottingham Biomedical Research Centre based at Nottingham University Hospitals said: “I am delighted that NUH NHS Trust, 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 resourse, 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.”
About the New Members
Barts Health NHS Trust
With a turnover of £1.5 billion and a workforce of around 17,000, Barts Health is a leading healthcare provider in Britain and one of the largest NHS trusts in the country. The Trust’s five hospitals – St Bartholomew’s Hospital in the City, including the Barts Heart Centre, The Royal London Hospital in Whitechapel, Newham University Hospital in Plaistow, Whipps Cross University Hospital in Leytonstone and Mile End Hospital – deliver high quality compassionate care to the 2.5 million people of east London and beyond. https://www.bartshealth.nhs.uk/
Healthcare Quality Improvement Partnership (HQIP)
HQIP aims to improve health outcomes by enabling those who commission, deliver and receive healthcare to measure and improve our healthcare services. HQIP is responsible for several national healthcare quality improvement programmes, including managing and commissioning the National Clinical Audit and Patient Outcomes Programme (NCAPOP) on behalf of NHS England, the Welsh Government and in some cases other devolved authorities. www.hqip.org.uk
The National Institute for Health Research (NIHR) Bioresource is a panel of thousands of volunteers, both with and without health problems, who are willing to be approached to participate in research studies investigating the links between genes, the environment, health and disease. It is part of the National Institute for Health Research (NIHR) is the nation’s largest funder of health and care research. https://bioresource.nihr.ac.uk/
Nottingham University Hospitals NHS Trust
Nottingham University Hospitals NHS Trust is one of the biggest and busiest acute hospitals in England, employing 15,000 staff. We provide care to over 2.5million residents of Nottingham and its surrounding communities and specialist services to a further 3-4million people from neighbouring counties. www.nuh.nhs.uk
The Brain Tumour Charity
- The Brain Tumour Charity is the Third Sector’s Charity of the Year 2018. It is at the forefront of the fight to defeat brain tumours – the biggest cancer killer of children and under-40s – making a difference every day to the lives of people with a brain tumour and their families.
- It funds pioneering research to increase survival, raises awareness of the symptoms and effects of brain tumours and provides support for everyone affected.
- The Charity’s goals are to double survival within 10 years in the UK and to halve the negative impact that brain tumours have on quality of life.
- Find out more:
The Cystic Fibrosis Trust
- The Cystic Fibrosis Trust is the only UK-wide charity dedicated to fighting for a life unlimited for everyone affected by cystic fibrosis
- For confidential advice, support and information on any aspect of cystic fibrosis, including help with financial support contact the Cystic Fibrosis Trust helpline on (+44) 0300 373 1000 or 020 3795 2184
- The work we do is only made possible by the generous donations from our supporters. Visit cysticfibrosis.org.uk to find out more about cystic fibrosis, the work of the Trust and how you can help our fight for a life unlimited.
UK Biobank is a national and international health resource with unparalleled research opportunities, open to all bona fide health researchers. UK Biobank aims to improve the prevention, diagnosis and treatment of a wide range of serious and life-threatening illnesses – including cancer, heart diseases, stroke, diabetes, arthritis, depression and dementia. It follows the health and well-being of 500,000 volunteer participants and provides health information, which does not identify them, to approved researchers in the UK and overseas, from academia and industry. The resource is funded predominantly by the MRC and Wellcome Trust. It has undertaken genetic analysis of participant samples and is currently running the largest ever imaging study to scan the hearts, brains and bones of 100,000 participants. www.ukbiobank.ac.uk @uk_biobank
University Hospitals Birmingham NHS Foundation Trust
University Hospitals Birmingham NHS Foundation Trust runs the Queen Elizabeth Hospital Birmingham, Birmingham Chest Clinic, Heartlands Hospital, Good Hope Hospital, Solihull Hospital and various community services across the region. The Trust has regional centres for trauma, burns, plastics, neurosciences, dermatology and cancer. It also has centres of excellence for vascular, bariatric and pathology services, as well as the treatment of MRSA and other infectious diseases. We also have expertise in HIV/AIDS, premature baby care, bone marrow transplants and thoracic surgery. https://www.uhb.nhs.uk/home.htm