The world’s most important health data resource
In the four years between 2006 to 2010, UK Biobank recruited 500,000 people (all aged between 40 to 69) to take part in a unique project.
They provided detailed information about themselves, provided blood, urine and saliva samples, and agreed to allow UK Biobank to follow their GP and hospital records throughout their lives. The aim: to build a world-leading national and international health data resource, open to approved bona fide scientists and researchers anywhere in the world. They are obliged to return their findings to UK Biobank when their work is complete, so that other scientists can benefit.
Its scope and potential is amazing. Supported by the NHS, the UK Biobank was established by the Wellcome Trust, Medical Research Council, Department of Health, the Scottish Government and the Northwest Regional Development Agency. It has also had funding from the Welsh Government, British Heart Foundation, Cancer Research UKand Diabetes UK.
One thing that makes the UK Biobank so special is that it is not a ‘disease collection’ of people suffering from a specific problem. It means that researchers can study people before they develop many diseases, follow them through life and understand better what factors determine their health outcomes. By following the anonymised health and well-being of 500,000 individuals, 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, osteoporosis, eye disorders, depression and forms of dementia.
It also allows research projects to take place on previously unimaginable scales. For example, 100,000 UK Biobank participants have worn a 24-hour activity monitor for a week. It has run the largest ever body scanning project in the world, scanning 100,000 people to provide images of their brains, hearts, bones, carotid arteries and abdominal fat.
According to the Life Sciences Industrial Strategy, “UK Biobank has already achieved very substantial industry engagement and is proving a magnet for both diagnostic and pharma companies.”
Next up: the whole genome sequencing of the 500,000 people that make up UK Biobank. That would be massive for the whole field of precision medicine.
UK Biobank demonstrates the power and value of bringing together - and then sharing - large amounts of different types of data. It shows how such a project can navigate the digital environment and clear significant regulatory issues surrounding data access. It may fundamentally transform what happens in healthcare over the next decade.
And the UK is making it happen.