Seven data hubs that enable research for health discoveries and aim to give patients across the UK faster access to new treatments will be rolled out next month.
Led by Health Data Research UK, these hubs aim to improve the lives of people with debilitating conditions, and will link up different types of health data to make it more easily accessible and user-friendly for research, while maintaining controls around data privacy and consent.
The potential benefits to patients include earlier diagnosis, the development of more effective treatments and more efficient management of the health service, all of which have the potential to improve outcomes, helping patients enjoy longer and healthier lives.
Patients, researchers and clinicians will work together to explore the use of health data for research into specific diseases. They will also enable access to data for trialling new treatments and support improvements in clinical care. Patients will be involved in decisions about how their data is used to ensure the benefits are returned to the NHS and the wider UK community, and existing rules for accessing data will continue to apply.
The seven hubs are:
- DATA-CAN that aims to transform how cancer data from across the UK can be used to improve patient care, diagnose the disease earlier, and enable people to access innovative new medicines;
- INSIGHT that will use data and advanced analytics, including artificial intelligence, to develop new insights in eye disease and how this applies to wider health;
- G.I. Know that will use data to address the urgent need to better understand why patients with Crohn's Disease and Ulcerative Colitis respond differently to treatments;
- PIONEER that will use data from community health, the ambulance service and hospitals to enable innovative healthcare companies to develop, test and deliver advances in clinical care;
- NHS DigiTrial to increase opportunities for patients to participate in clinical trials;
- BREATHE that aims to improve the lives of people with respiratory conditions;
- Discover-NOW to improve understanding of many long-term conditions, starting with Type 2 Diabetes, finding new life saving treatments by using advanced technologies and artificial intelligence, and even preventing them altogether.
Sarah Brooke, Public Advisory Board member at Health Data Research UK, said: "The Public Advisory Board were keen to be involved in the selection process to raise awareness of the importance of public engagement and involvement in the Hubs. We see the Hubs playing a key role in engaging with the public about their work, raising public awareness of using data in research, scrutinising how the data is to be used and ensuring public trust remains at the heart of this important work."
The Health Data Research Hubs are part of a four-year £37 million investment from the UK Government Industrial Strategy Challenge Fund (ISCF) announced in November 2017 led by UK Research and Innovation, to create a UK-wide system for the use of health-related data on a large scale.
Science minister Chris Skidmore said: “We will all know someone who has been through the trauma of a devastating illness, and received care and treatment through our brilliant NHS.
“The new data hubs announced today have the potential to save millions of people’s lives. They will take the information the NHS has at its fingertips to identify patterns, speed up research and find the treatments we all hope for.
“Backed by £37.5 million of government funding, this is a key part of our commitment to invest at least 2.4% in R&D, the biggest ever boost to R&D funding in UK history and keeping the nation at the forefront of scientific and medical discoveries.”
Each hub was selected following an open competition by an independent panel involving patient and public representatives. They were assessed against criteria that included the potential for impact, the innovative uses of data, plans for involving patients and the public, and the value for public funding.
Over 100 organisations from the NHS and universities to charities and technology and pharmaceutical companies across the UK are involved in the hubs. The aim is to bring their collective expertise together to maximise the value of health data research potentially benefiting millions of people across the country.
Andrew Morris, a doctor with a specialist interest in diabetes and director of Health Data Research UK, added: “The spirit of partnership and collaboration between patients, the public, the NHS and others in defining how these hubs will work has been terrific. Any decisions about how the data will be used will always put patient privacy, safety and benefit first and we have multiple safeguards in place to ensure this happens.
“The NHS organisations involved will, at all times, remain the data controllers and no personal data will leave the NHS.
“Quite rightly we recognise that people will want to know how their health data is used, which is why we have taken robust steps to ensure that all of the organisations involved in this will be required to comply with existing obligations and safeguards, and are open and transparent about how data are used.”
