New research centres connecting regional healthcare data with genetic and biomedical information will be set up in the UK following a £37.5m government investment.
Between three and five ‘Digital Innovation Hubs’ will be established over the next three years, which pull data from GP practices, hospitals, social and community care providers for research and development purposes.
Funded through the UK government’s Industrial Strategy Challenge Fund, the hubs will cover populations of 3-5 million people and aim to complement NHS England’s Local Health and Care Record Exemplar (LHCRE) programme, and NHS Digital’s Data Services Platform.
It is hoped the combined datasets will provide a foundation for NHS clinicians, scientists and researchers to find new treatments for chronic diseases such as cancer, heart disease and asthma.
Health and social care secretary Matt Hancock said the new hubs would “allow researchers to unlock new advances by harnessing the huge potential of data, so the NHS will continue to lead the way in technology that improves patient care”.
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.
The hubs will be led by Health Data Research UK (HDR UK), the national institute for data science in health, on behalf of UK Research and Innovation.
Professor Andrew Morris, director of HDR UK, said the project would “help deliver direct benefits to the NHS and the 65 million citizens of the UK.”
He added: “We know from international research that the best performing health systems in terms of patient safety and quality of care are research and data enabled. We expect the creation of Digital Innovation Hubs will help deliver direct benefits to the NHS and the 65 million citizens of the UK.”
HDR UK said it would be “transparent in how and why data is used, stored and shared” by working closely with UK regulatory bodies and established guidelines.
Dr Natalie Banner, a data lead at research charity Wellcome, suggested there was an “enormous potential to unlock the benefits of this data if it is done responsibly, with the support of patients, clinicians and [the] public.”
Dr Banner added: “It is really positive to see HDR UK emphasising the importance of creating a trustworthy system as they approach these complex challenges.”
Last week, Hancock announced that the NHS would receive half a billion pounds of fresh investment in technology.
30 July 2018 @ 12:18
I suspect you are right. It will need s251 (CAG/HRA) support then. However, doing so means it will be optional for GP practices to contribute.
26 July 2018 @ 14:14
Could someone tell me how this differs from Care.data – apart from apparently lacking any of the “safeguards” in the original plans?
Is there anything in the public domain about this data-lake project?
I – and a good many others – have Type 1 ? 2 optouts registered with my TPP practice: will these prevent my data being uploaded to one or more of these hubs?
My letter from NHS Digital saying my Type 2 optout has been converted to the new National Optout *doesn’t* mention that, for at least 3 years, the Type 2 optout had not been registered by TPP: is my record up to the date of registration by TPP being made available to any hubs?
The letter also says that all other optouts will continue to be observed: does this include Type 1 (no data to leave GP surgery)?
If so has TPP uploaded (or applied) the optouts? (How do I check?)
I am aware that NHS Digital told the Health Select Committee that “Medical records were a National Assett”: does this mean there are plans to ask the Secretary of State for Health to issue a Direction?
PS I don’t think the leaflet enclosed was any advance on the one issued as junk mail on care.data!
26 July 2018 @ 19:45
Uploads to the data lakes (“son of care.data”) will be mandated under s259 of HSCA.
They will have to be, in order for GPs not to breach the common law of confidentiality.
Type 1 opt-outs should prohibit such uploads – until they are withdrawn in 2020 – which, of course, is what NHS Digital so crave. Once withdrawn, and since uploads to care.data2 will be a legal obligation – Article 6(1)(c) – there will be no right to object.
The Type 2 objections (National Data Opt Out) will only then prohibit disclosures, by the data lakes’ controllers, where identifiable or pseudonymised (both are personal data under GDPR).
30 July 2018 @ 11:59
Note that s259 only covers data flowing to NHS Digital. It can’t, I think, be used to mandate data flows from eg GP to any other body. So maybe the operating model is that the hubs are customers of NHS Digital (but that doesn’t sound like what is being proposed from this report).
26 July 2018 @ 13:37
Terrifying prospect. Agreed: a few years’ taking whatever risks preferable to decades of surveillance by any other name.
26 July 2018 @ 09:45
Personally, faced with the choice, I find a short life free from the NHS a more attractive option than a (possibly) longer life being used as fodder to stoke the growth of the digital economy. This is money going into industrial development, not into healthcare. Small wonder the NHS is starved of resources, creating a vicious circle of ever more ineffective healthcare, leading to ever greater demand for healthcare. Who cares, as long as the economy is healthy? Ever more demand for healthcare will create ever more data to feed the economy. The man in charge of Health is actually serving the Government’s industrial strategy, which is to be a parasite feeding on healthcare.
26 July 2018 @ 11:36
I’m not even sure where to start with the levels of hyperbole in this comment