Technology and pharmaceutical companies, researchers and clinicians will gain access to NHS patient data to boost research capabilities through new data hubs to be launched next month.
Seven hubs, led by Health Data Research UK, aim to improve the lives of people living with debilitating conditions by linking up health data and making it more accessible for research purposes.
The data will be used to deliver new treatments for diseases such as cancer, inflammatory bowel disease and asthma.
More than 100 organisations from the NHS, universities, charities and technology and pharmaceutical companies, including Novartis, Roche and AstraZeneca, across the UK are involved in the hubs.
Health Data Research UK assured patient data would be protected with “strict controls around data privacy and consent” and patients would be involved in decisions about how they’re data is used.
Andrew Morris, director of Health Data Research UK, said: “The UK is home to some of the world’s leading researchers and innovators who have historically struggled to access large scale data about people’s health.
“Creating these hubs and the wider secure infrastructure will, for the first time, give researchers the opportunity to use data at scale to research the genetic, lifestyle and social factors behind many familiar common diseases and identify revealing data trends which may help with finding cures or treatments.
“With a clear focus on data security, safety and public involvement, this is an important and exciting next step in the UK’s health data proposition and builds on the fantastic strengths we have across our health service, universities and industry.”
The hubs are part of a four-year £37million investment from the Government’s Industrial Strategy Challenge Fund (ISCF) announced in November 2017 and will be led by UK Research and Innovation. The aim is to create a UK-wide system for the safe and responsible use of health-related data on a large scale.
They will also complement NHS England’s Local Health and Care Record Exemplar (LHCRE) programme, and NHS Digital’s Data Services Platform.
The programme is part of the second wave of the £210 million Industrial Strategy Challenge Fund, which centres on the use of data for precision medicine and the early diagnosis of diseases.
Sarah Brooke, public advisory board member at Health Data Research UK, said: “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.”
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; innovative uses of data; plans for involving patients and the public; and the value for public funding.
The seven hubs are:
- A cancer hub 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, potentially contributing to saving the lives of 30,000 cancer patients a year
- An eye health hub that will use data and advanced analytics, including artificial intelligence, to develop new insights in eye disease and how this applies to wider health such as dementia and diabetes
- An inflammatory bowel disease hub 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
- An acute care hub 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
- A clinical trials hub to increase opportunities for patients to participate in clinical trials
- A respiratory hub that aims to improve the lives of people with respiratory conditions, such as asthma and chronic obstructive pulmonary disease (COPD)
- A hub that aims to use real world data 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
One of the hubs selected aims to revolutionise the way clinical trials are delivered by providing services to determine whether a trial is feasible, and to support better planning and delivery of clinical trials.
The NHS DigiTrial hub, a partnership between NHS Digital, the University of Oxford, Microsoft and IBM, will initially provide a foundation service to return cohort feasibility queries and support patient enrolment and communication.
It aims to reduce the costs of further medical treatments and attract future investment to the UK.
Sarah Wilkinson, chief executive of NHS Digital, said: “As the primary national data custodian for the health and care system, NHS Digital’s first and central consideration in all such work is operating within appropriate privacy, security and information governance frameworks, and these will guide the design and delivery of this new service.”
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