Tony Blair Institute calls for creation of NHS Data Trust

Former prime minister Tony Blair’s think tank, the Tony Blair Institute, has called on the NHS to create a public-private partnership in the form of an NHS Data Trust.

The idea was floated in the institute’s latest report, A new national purpose: Leading the biotech revolution, authored by Blair and former Conservative Party leader William Hague.

The report called for a new approach to using healthcare data to support medical breakthroughs, harnessing the masses of anonymous patient data held by the NHS.

According to the report, the data trust would be “owned and controlled by the NHS in collaboration with trusted external partners” and would “treat NHS data as a competitive asset whose value can be realised for the benefit of the public”.

“This would involve providing anonymised data to research entities, including biotech companies, in return for financial profit that would then benefit our health service,” the report said.

“A transparent governance model would ensure that our data remain safe and that the NHS Data Trust’s operations align with public health objectives, not private capital’s.”

The UK government has previously tried and failed to create something similar, albeit without the plans for commercial gains.

The Care.data programme launched in spring 2013 intended to extract data from GPs to be stored in a central database held by the then Health and Social Care Information Centre. The aim was to create a data platform that could help researchers develop new treatments and improve care, but the programme struggled with public backing.

The plans were slaughtered by privacy campaigners, and eventually, following a review by former national data guardian Fiona Caldicott on opt-outs and data sharing in the NHS, the government decided to scrap the programme

The Blair report also proposed a partnership between laboratories, industry and the NHS to work together towards personalised artificial intelligence (AI) doctors, using AI to help doctors treat people “in a way that is cost-effective, relieving the pressure on our struggling NHS”.

“AI doctors will be able to find connections humans can’t between disparate sets of data to drive individual and collective health,” the report said.

“The UK should lead this endeavour, pioneering a research laboratory with a well-resourced core institute that has the ability to fund researchers and clinicians around the country. These will complement and assist, not replace, human doctors. The acquisition of quality human data is a global bottleneck for AI, but the UK Biobank and the establishment of an NHS Data Trust … would together offer a competitive edge.”

A previous report by the Tony Blair Institute, published in February 2023, said that if the UK state is not remade to be a “strategic state”, the country will decline as the US and China continue to rise.

The report said the think tank wanted to see “new models of organising science and technology research”, including greatly expanding the Advanced Research and Invention Agency (ARIA), and an “edtech-training fund to improve teachers’ confidence”.