The association includes 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).

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.

Professor Mark Lawler Chair in Translational Cancer Genomics at Queen’s University Belfast and Associate Director Health Data Research Wales Northerm Ireland welcomed the formation of the  new cross UK alliance saying:

“ This is a huge opportunity to work together to ensure that the precious health data resouces that  we have in the UK are employed in an effective and responsible was for the benefit of patients, citizens and society. A data enabed health agenda will deliver a transformational step change to medical research and its translation to best quality clinical care."

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.”

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 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.”

Queen’s will host a public engagement event “Whats the Big Deal with Big Data” on Tuesday 19^th February as part of the Northern Ireland Science Festival at which both Prof Lawler and Prof Young will speak. Futher details at https://www.nisciencefestival.com/programme.php?s=data  

 

Mark Lawler

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