Tony Blair Institute weighs in on use of NHS patient data

TBI executive chairman and former UK Prime Minister Tony Blair

TBI executive chairman and former UK Prime Minister Tony Blair

A think tank set up by former UK Prime Minister Tony Blair has called for the formation of a public-private trust that could oversee the sharing of anonymised patient data with trusted researchers.

The Tony Blair Institute (TBI) said the creation of an NHS Data Trust (NDT) to commercialise data would help develop the UK’s life sciences sector, as well as related industries like artificial intelligence, and accelerate the development of new treatments for patients and boost the country’s economy.

The call is made in a just-published white paper – entitled A New National Purpose: Harnessing Data for Health – which concludes that the complex and fragmented nature of the current health-data landscape, coupled with “legitimate concerns around privacy and public trust,” has meant progress in this area has been painfully slow.

Those issues were thrust into the spotlight last year after NHS England awarded US IT group Palantir a contract to create a platform designed to bring together existing NHS data into a single framework, drawing criticism from Amnesty International, which has questioned the company’s human rights record.

TBI is calling for a “bold and imaginative” strategy to overcome the current fragmented situation in the UK, where data projects have been split across multiple projects that have “struggled to achieve long-term sustainability and deliver tangible benefits to patients.”

The NDT would operate as an independent commercial entity owned by the UK government and NHS – with co-investment from industry – and could be set up as soon as 2026. It would be akin to BBC Studios, which operates as a content-producing business, according to the paper.

It would be charged with curating access to data assets like anonymised medical records, biobanks, and genome testing, generating access fees as well as revenues from services like data discovery, clinical trials, and the analysis and facilitation of research, while “maintaining public ownership and protection of the data, and never selling or transferring them to private interests.”

It suggests that the economic growth from those efforts could be as much as £2 billion a year, which could be invested in making sure innovations are available to the NHS more quickly.

There would be a big benefit in clinical research alone, as it would help foster a unified clinical trials service that could restore the UK’s standing as a site for pharma research, which has been dipping in recent years. Meanwhile, the aim would be to move away from GPs being the main controllers of a lot of patient data.

The proposals have been broadly welcomed by Dr Julia Wilson, director of strategy at the Wellcome Sanger Institute, who said: “Access to representative health data is key to realising the benefits that AI, machine learning, and innovation can deliver for accelerating discoveries and drug development.”

“Large-scale datasets are the critical foundation of discovery, from providing diagnoses for children with rare developmental disorders, to finding new personalised treatments for autoimmune diseases and cancer,” she added.

“To make the Data Trust a success, it requires a baseline of trust and responsible data sharing, plus solutions to technical challenges, such as interoperability, so that [this] data [is] accessible to all researchers.”

The broad aims were also endorsed by Professor Sir Rory Collins, chief executive of UK Biobank, although, he suggested there is a simpler solution.

“Scotland and Wales have already centralised much of their health data within the NHS. In England, we need to do the same (including, in particular, primary care data), so that the whole of the UK is covered,” he said.

“As we saw during the pandemic, NHS England already has the necessary secure systems, processes, and skills to enable important health research. What they don’t have is secure long-term funding to make it a priority, or retain the teams who can support the process.”