Health Data Research UK and the British Heart Foundation (BHF) have today announced the launch of the BHF Data Science Centre, which will deliver the data and data science needed to address some of the most pressing challenges in heart and circulatory health research.
The £10 million Centre will be headed by Professor Cathie Sudlow, a stroke and neurology doctor in Edinburgh and current Chief Scientist of UK Biobank. Professor Sudlow now begins the work of establishing the centre, shaping its mission and strategy, and ensuring the views of patients and the public are central to its activities.
The Centre will work in partnership with patients, the public, NHS, researchers and clinicians to promote the safe and ethical use of data for research into the causes, prevention and treatment of all diseases of the heart and circulation. Its work will be underpinned by Health Data Research UK’s secure health data infrastructure, which upholds the highest levels of information governance, protecting the privacy and security of patients’ data. It will also benefit from alignment with Health Data Research UK’s existing network of experts, its recently announced Health Data Research Hubs and the wider cardiovascular research community.
The BHF Data Science Centre will not hold data itself. Instead, it will work with the data-controllers to provide knowledge and expertise to help bona fide researchers from the NHS, academia and industry find, access, understand and connect the UK’s unique cardiovascular ‘big data’ that is distributed across national registries, NHS electronic medical records and other relevant datasets.
The ultimate aim of the centre is to enable responsible, ethical research that combines the power of advanced analytic methods with the UK’s large-scale and diverse cardiovascular data. The high impact outputs will help to shape better cardiovascular health services, provide patients and health professionals with the tools to make better decisions, and bring the latest medical discoveries to patients across the UK faster than ever before.
Professor Cathie Sudlow, Director of the BHF Data Science Centre, said: “As a doctor who has had the privilege of caring for patients, as well as conducting and enabling research studies that rely on large-scale patient data, I’m delighted to be leading this new centre. Cardiovascular disease affects the lives of over 7 million people in the UK and remains one of the largest causes of death and disability, despite major progress over the last two decades. Behind the statistics are the devastating effects that heart attacks, strokes, dementia and other diseases of the circulation can have on the lives of patients and their families, friends and carers. This new centre provides the UK with an unprecedented opportunity to use data for research that will deliver strategies for prevention, innovative new therapies and medical breakthroughs that will ultimately improve the lives of people affected by cardiovascular disease.
“We will partner with NHS organisations who will, at all times, remain the data controllers. We recognise how important it is that people understand how their health data is used, which is why we will work closely with patients, ensure the highest standards of data security and privacy, and will be open and transparent about how data are used.”
As the leading funder of research into heart and circulatory diseases in the UK, and the largest independent funder in Europe, the BHF has supported work covering the full spectrum from discovery science to innovation in practice for almost 60 years.
Professor Sir Nilesh Samani, Medical Director of the BHF, said: “The UK is blessed with many world-class heart and circulatory disease researchers, spanning a wide range of disciplines. But, as we enter the era of digital medicine, there’s a growing need to foster excellence in data science. At the BHF, we recognise the enormous potential of data science and want to create an environment where we can realise that potential. That’s why we’re working with the health research community, key stakeholders, professional bodies and UK data controllers to create the BHF Data Science Centre. Under Professor Cathie Sudlow’s leadership, the Centre has the potential to revolutionise the diagnosis, treatment and care of people living with heart and circulatory disease.”
Andrew Morris, Director of Health Data Research UK, said: “This centre has the opportunity to revolutionise what we know about heart and cardiovascular disease. Using cutting-edge data science techniques, public engagement, and some of the best cardiovascular health data sets in the world, it will provide a solid foundation for some of the most formative research for decades to come.”
Kelvin Pitman, Member of the British Heart Foundation Data Panel, said: We are all becoming increasingly aware of both the importance and value of our personal data as evidenced by big global corporations’ desire to access it and governments’ efforts to ensure individuals retain their control over it. Our health and medical data is of course an especially sensitive area.
As a heart patient, I have been pleased with others to have had the opportunity to advise the BHF on health data matters for a number of years. As much as I have been keen to protect my own personal data, I have come to realise what a real goldmine our collective anonymised health data is for advancing medical knowledge. It is with great pleasure and excitement that in some small way I have had the opportunity to be able to help the setting up of the British Heart Foundation Data Science Centre through the good offices of Health Data Research UK.
Cardiovascular data is currently and will continue to be held in a multitude of locations, so it is profoundly important that a mechanism will now exist to facilitate ethical access to that data across a multitude of disciplines. I truly believe that this will be one of the most important driving forces in advancing cardiovascular patient treatment in the coming decades. What is more, as I and others have been delighted to find, patients are already being involved as key stakeholders.