UK’s leading health organisations form Health Data Research Alliance to transform future health and care
8 February 2019
The NHS in England, Scotland and Wales along with Health and Social Care Northern Ireland, NHS Digital, Genomics England, Health Data Research UK, Public Health England and Clinical Practice Research Datalink (CPRD) announced today that they will create a non-profit association to accelerate progress in medicine and health.
The UK Health Data Research Alliance, supported by Health Data Research UK, will develop and co-ordinate 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 founding members will 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.
For the first time, the Alliance will unite expertise to establish best practice in the stewardship of the UK’s health data – including patient data from the NHS, genomic data and other molecular data – to enable faster, more efficient access for research at scale. This will speed up progress in science and medicine at a pace never achieved before in the UK.
By combining expertise and a shared commitment to work collaboratively, the Alliance will help researchers to answer some of the most difficult questions and address the most important health challenges faced in the UK, using and evaluating new tools such as artificial intelligence and machine learning. Other custodians of large-scale health data are warmly welcomed to join the Alliance to widen the opportunities for medical breakthroughs.
Members recognise that data has a huge potential to enable discoveries that will improve healthcare services, transform knowledge of disease and drive improvements in diagnosis and care. Through the development of best practice, and by earning trust in health data use, the founding members of the Alliance aim to maximise this potential and ensure it benefits as many people across the UK as possible.
Health Minister, Nicola Blackwood, said:
“The NHS has a unique data pool which has the potential to unlock solutions to some of the biggest challenges facing healthcare in the future.
“The new Alliance will create a framework for organisations to work to the highest ethical standards and enable responsible access to data across the health research community, improving patient outcomes and increasing public confidence.”
Dr Janet Valentine, Director of Clinical Practice Research Datalink, said:
“The UK Health Data Research Alliance offers an opportunity to work in partnership to unlock the value of data held within the NHS and our biomedical research data. We hope this collaboration will uncover insights leading to improved patient and public health. The Clinical Practice Research Datalink is delighted to be a founding member of this collaboration.”
Professor Ian Young, Chief Scientific Advisor, Department of Health Northern Ireland, said:
“We welcome the opportunity to work in partnership with other nations in the UK to share best practice in relation to sharing and learning from health data, for the benefit of all of our populations.”
Professor Mark Caulfield, Interim Chief Executive at Genomics England, said:
“Genomics England is proud to be part of the UK Health Data Research Alliance. Working together, we will share our experience and expertise, and will shape and implement the very best practice in the use of health data in research and innovation. The Alliance will develop best practice and trust in our use of research data and thereby improve all our work for the benefit of patients.”
Professor Andrew Morris, Director of Health Data Research UK, said:
“We are delighted to be working in partnership with colleagues and the public across the UK to identify best practice in how health data might be enabled for research. This will not only improve patient care, and help the NHS understand and prevent disease, but also catalyse new discoveries that transform lives. Currently practice is often siloed and activities duplicated, wasting time and money. The Alliance will propel the UK into an international leadership position. It is not about creating a single data system – by banding together, we are creating a UK wide approach for launching efforts, methods and innovations that will demonstrate the research power of health data.”
Will Smart, Chief Information Officer for Health and Care, NHS England said:
“The NHS has led the way in research and innovation from discovering DNA to pioneering IVF, but looking into the future using data for research could result in even more breakthroughs.
“This new Alliance will help the NHS use the data we hold, in line with how patients want their information to be used, to drive improvements in health and care and enable every opportunity for new world changing discoveries.”
Professor Peter Bradley, Director of Health Intelligence at Public Health England, said:
“Data is at the heart of everything we do and is key to preventing ill health – this is a great initiative across agencies, which will carefully and collaboratively set out how best to use and share health data for the public good.”
Professor David Crossman, Chief Scientist (Health), Scottish Government said:
“Working across the UK is important for Scotland in the area of health research. There are different systems between nations in the UK but the health problems are similar and the solutions will be found by working at scale across the UK. In addition, the Alliance will allow the sharing of best practice and opportunity which is also welcome in Scotland. We share the common vision that health data is going to provide the new method for investigating human disease, its causes and potential new treatments and this Alliance will help take this forward.”
The UK Health Data Research Alliance is part of the Digital Innovation Hub Programme. This four-year Programme is funded by the UK Research and Innovation’s Industrial Strategy Challenge Fund (ISCF). It is an element of the ISCF’s Data to Early Diagnosis and Precision Medicine challenge, placing early diagnosis and best treatments for particular patients at the heart of a national approach to better health.
Health Data Research UK
0203 950 3715
Notes to editors:
The UK Health Data Research Alliance is not a data controller. It is an independent Alliance of health data controllers and acts as an unincorporated, not-for-profit and cost neutral association.
The Alliance encourages widespread access and use of health data to advance human health by:
i. Being patient and public centred: building trust by supporting and promoting the responsible sharing of health data, respecting data sharing and privacy preferences of participants, and using best practices in public outreach, security, ethics, and regulation.
ii. Working together as one to provide researchers and innovators with services and value that no organisation can deliver on its own.
iii. Offering a world-leading range of health data science tools, processes and solutions to security, ethics and privacy
iv. Being committed to innovation to improve customer service and responding to the needs of health data users who are doing the science and innovations: making data faster and less expensive to find and access by harmonising, simplifying and making transparent policies, standards and codes of conduct for the storage, analysis and responsible access of data.
v. Establishing technology and ways of working to increase use of and insights from data: building trust and effective ways of working among stakeholders, making datasets available to use on a versatile, secure information platform, making tools and models available, adopting best practices in governance and commercial models to develop an ecosystem that accelerates progress.
ABOUT THE MEMBERS
Clinical Practice Research Datalink (CPRD)
Clinical Practice Research Datalink (CPRD) is a real-world research service supporting retrospective and prospective public health and clinical studies. CPRD is jointly sponsored by the Medicines and Healthcare products Regulatory Agency and the National Institute for Health Research (NIHR), as part of the Department of Health and Social Care. CPRD collects de-identified patient data from a network of GP practices across the UK. Primary care data are linked to a range of other health related data to provide a longitudinal, representative UK population health dataset. The data encompass over 35 million patient lives, including 11 million currently registered patients. For further information visit www.cprd.com
Genomics England is a company owned and funded by the Department of Health & Social Care. Its four main aims are: to create an ethical and transparent programme based on consent; to bring benefit to patients and set up a genomic medicine service for the NHS; to enable new scientific discovery and medical insights; and to kick-start the development of a UK genomics industry. For further information visit https://www.genomicsengland.co.uk/ or follow on Twitter @GenomicsEngland
Health Data Research UK
Health Data Research UK is the national Institute for data science in health. Our mission is to unite the UK’s health data to make discoveries that improve people’s lives. Our UK team of experts develop and apply cutting-edge data science approaches to clinical, biological, genomic and other multi-dimensional health data to address the most pressing health research challenges facing the public. We are funded by UK Research and Innovation, the Department of Health and Social Care (England), the UK devolved administrations, and leading medical research charities. For more information visit www.hdruk.ac.uk or follow us on Twitter @HDR_UK
NHS Digital is the national information and technology partner of the health and care system. Our team of information analysis, technology and project management experts create, deliver and manage the crucial digital systems, services, products and standards upon which health and care professionals depend. During the 2017/18 financial year, NHS Digital published 275 statistical reports. Our vision is to harness the power of information and technology to make health and care better. For more information visit https://digital.nhs.uk/ or follow us on Twitter @NHSDigital
NHS England leads the National Health Service (NHS) in England – setting the priorities and direction, encouraging and informing the national debate to improve health and care. The NHS in England deals with over 1 million patients every 24 hours and employs more than 1.5 million people, putting it in the top five of the world’s largest workforces NHS England shares out more than £100 billion in funds and holds organisations to account for spending this money effectively for patients and efficiently for the tax payer. It strongly believes in health and high quality care for all, now and for future generations. For further information visit www.england.nhs.uk/
NHS Wales is the devolved health service for Wales, delivering services through 7 Health Boards and 3 NHS Trusts. http://www.wales.nhs.uk/
CSO (the Chief Scientist Office)
The CSO is part of the Scottish Government’s Health and Social Care Directorates and supports high quality research within NHSScotland and the wider health and care community. More information on the CSO is at https://www.cso.scot.nhs.uk
NHS Scotland is the publicly funded healthcare system in Scotland. It operates 14 territorial NHS Boards across Scotland, seven special non-geographic health boards and NHS Health Scotland. https://www.scot.nhs.uk/
Public Health England
Public Health England (PHE) exists to protect and improve the nation’s health and wellbeing, and reduce health inequalities. It does this through advocacy, partnerships, world-class science, knowledge and intelligence, and the delivery of specialist public health services. PHE is an operationally autonomous executive agency of the Department of Health. For more information on PHE visit www.gov.uk/phe or follow us on Twitter @PHE_uk.
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