Amanda White, Director of Communications and Marketing at Health Data Research UK, reflects on the opportunities to harness the UK’s strengths in data science to transform health
The UK has a rich heritage of using health data for research, innovation and to inform care. The expertise in collecting data on patients and populations, linked to careful computation and data analysis has led to scientific breakthroughs that have transformed lives over many decades; for example, Sir Richard Doll’s ground-breaking discovery in 1950 of the association between smoking and cancer.
As we approach the fourth Industrial Revolution, we have the exciting prospect of analysing a unique array of health, biological, genomic and other multi-dimensional datasets across a population of up to 65 million people.
Any such analyses have to be in the public interest in our quest to address health research challenges relevant to a growing and ageing society. There is an extraordinary opportunity to combine these unique assets to transform lives at scale. We know from experience that insights gained through health data research can improve the quality of health and social care services, for example, improving cancer and heart disease outcomes and have positive implications for public health, our understanding of disease and the safe and effective use of medicines. In turn, this improves the way we are able to prevent, detect and diagnose diseases such as cancer, heart disease and asthma and allow patients to benefit from scientific breakthroughs much faster.
Scale and joining up expertise is important. In 2017, the Medical Research Council, the Economic and Social Research Council, the Engineering and Physical Sciences Research Council, the government health research departments in England, Scotland, Wales and Northern Ireland came together with charities including the Wellcome Trust and British Heart Foundation to create Health Data Research UK (HDR UK) – a new nationwide institute for the UK to make game-changing improvements in people’s health. These nine funders recognised the pivotal contribution of health data research to the UK’s ambition to be a leader in life sciences.
Health Data Research UK is harnessing the inter-disciplinary expertise and high-value data assets to power health data science discovery and innovation to improve human health. Working in partnership with universities, NHS organisations, charities, industry and other charitable institutions, it has made an initial investment of £67 million in six substantives sites; each with world-class expertise; and a track record in using health data securely to derive new knowledge and scientific discovery.
These HDR UK Sites will develop secure and controlled environments within the highest standards of data security, privacy and ethical approval, to provide expert research data services and enable the ethical analysis and sharing of healthcare, clinical, genomic, biological and other multi-dimensional data. Together they will perform ground-breaking research, with an initial focus on; (i) using data and analytics to inform quality health systems; (ii) the development of precision medicine so that we harness genetic information to make interventions more precise, personalised, participatory and preventative; (iii) making clinical trials more efficient and effective; and (iv) using technologies for public health interventions.
Our priority is to understand all research on data in a trustworthy, transparent and legal way, ensuring all analyses are in the public interest. From a technical perspective, data are kept separate, with ownership remaining with the host organisations (for example, the NHS) and are only linked when there is a legitimate purpose. Security and trust are achieved in layers, with multiple approaches concurrently at work that reduce data travel, separate personal identifiable data from other data, restrict access to accredited researchers and use effective consent and anonymisation methods.
Public engagement and participation that is informed and shapes the research programme are vital. Our research principles will build on best practice and we will work with patients and the public to ensure that data is used to serve the needs of society.
Previous studies in diabetes have shown that turning data into knowledge has improved co-ordination of clinical care, reduced life-threatening complications such as amputation and blindness, whilst shedding light on the genetic causes of disease. The vision of Health Data Research UK is to demonstrate impact across multiple disease areas and care pathways to support the health and quality of health services of the UK and beyond.
“As we approach the fourth Industrial Revolution, we have the exciting prospect of analysing a unique array of health, biological, genomic and other multi-dimensional datasets across a population of up to 65 million people. Any such analyses have to be in the public interest in our quest to address health research challenges relevant to a growing and ageing society.”
What is informatics?
Informatics is the use of maths, statistics and computer science to get answers from large, complex datasets. Datasets in health and biomedical research come from lots of different sources. Health Data Research UK works with biological, genomic, clinical, social and environmental data. Researchers will also use emerging forms of data like that from wearable technology.
About Health Data Research UK
Health Data Research UK is the national Institute for data science in health. We are funded by the Medical Research Council, the British Heart Foundation, the National Institute for Health Research, the Economic and Social Research Council, the Engineering and Physical Sciences Research Council, Health and Care Research Wales, Health and Social Care Research and Development Division (Public Health Agency, Northern Ireland), Chief Scientist Office of the Scottish Government Health and Social Care Directorates and Wellcome.
The six HDR UK sites and their members are:
Cambridge (bold) – Wellcome Sanger Institute, European
Bioinformatics Institute (EMBL-EBI), University of
London (bold) – UCL, Imperial College London, King’s College
London, Queen Mary University of London, The London
School of Hygiene & Tropical Medicine.
Midlands (bold) – University of Birmingham, University of
Leicester, University of Nottingham, University of Warwick,
University Hospitals Birmingham NHS Foundation
Oxford (bold) – University of Oxford.
Scotland (bold) – University of Edinburgh, University of
Aberdeen, University of Dundee, University of Glasgow,
University of St Andrews, University of Strathclyde.
Wales/Northern Ireland (bold) – Swansea University, Queen’s
Director of Communications and Marketing at Health Data Research UK
Health Data Research UK
Tel: +44 (0)20 3371 1393
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