How a US computer firm could soon get its hands on YOUR NHS medical records

Anyone who has ever had to navigate the NHS as a patient or carer will no doubt know the frustration and fear often caused by this vast organisation’s woeful inability to communicate within itself.

Your medical records are mislaid, an appointment wasn’t made — or you weren’t told about it; clinics use phone numbers and addresses you’ve moved on from years ago. Or clinicians don’t seem to know about the outcomes of previous appointments with other care teams.

But could the NHS’s left hand finally soon know what its right hand is doing? Early next month, NHS England is to sign a £480 million contract to build a master data-controlling system, linking up all the computer systems used across hospitals, GP practices and admin departments so they can ‘talk’ to each other.

It sounds wonderful, and yet the Federated Data Platform (FDP), as it’s grandly known, may come at a price, warn data-security experts — the end of our most intimate medical privacy.

They predict it will result in our details falling into the clutches of global corporates and artificial intelligence (AI) brains that could, on the basis of our medical conditions, block our credit, cancel health insurance, and harm our chances — or our children’s — of getting a mortgage.

But we’d never know why such calamities had befallen us.

What’s more, campaigners say, we may have no choice over this — as our information will go into this vast new NHS database regardless of what we say.

At the heart of all this lies a U.S. computer-analytics company: Palantir.

It’s named after the crystal balls from Tolkien’s Lord Of The Rings, in which Palantir means ‘to watch over from afar’.

Unnerving name aside, Palantir rings alarm bells with privacy campaigners. For while it’s worked to help aid agencies to deliver desperately needed supplies, for instance, its services have also been used by the CIA and other Western militaries.

Critics are also concerned by statements made by Palantir chairman Peter Thiel in January, when he declared that ‘the NHS makes people sick’ and called the public’s support for the health service as akin to ‘Stockholm syndrome’ (the psychological condition where victims identify with their abusers).

Palantir is one of three companies bidding for the FDP contract (the others are reported to be IBM and the UK data technology company Quantexa), but the commentators Good Health contacted agree it’s considered certain to win it, thanks to its close, if controversial, relationship with the Government.

Back in March 2020, as Covid-19 was being declared a pandemic, Palantir was invited to 10 Downing Street to discuss how it could help the Government’s response.

Within days, the company’s engineers were tracking A&E units’ capacity in order to keep them medically supplied. For this Palantir charged only £1.

Such generosity has apparently reaped rewards in terms of an entrée into the NHS.

Palantir has since acquired health contracts worth £60million, with FDP promising to be the most lucrative of all.

One of those with reservations about Palantir getting the FDP contract is Dr Vince Istvan Madai, visiting professor of medical informatics at Birmingham City University, who researches how AI can be used in healthcare in a trustworthy way.

He told Good Health that, in his view, it seems ‘quite extreme’ to allow a commercial company to perform data work and AI-related tasks within the NHS. Dr Madai recently co-authored a paper in the journal Frontiers in Genetics examining how European governments are trying to balance the risks of reaching patients’ privacy against the potential benefits of using medical data to improve health ervices.

‘Simply put, you can’t have your cake and eat it,’ he warns. ‘Increasing the availability of digital health data will likely improve healthcare services. But it will inevitably lead to the possibility of misuse. And if there is a possibility, then it will certainly happen.’

At Privacy International, a UK-based charity that defends privacy rights, its legal officer, Dr Tom West, told Good Health he fears that patients’ medical data will leak into the global network of decision-making software algorithms that increasingly gather information on people and make crucial calls on whether, for example, banks should lend to a customer or insurers consider an applicant worthy of cover.

He warns that the scenario of commercial companies getting hold of our data in ways that couldn’t be tracked ‘could happen … it’s a very complex issue about how the data ties together. The problem is that due to the obscure ways in which the algorithms work, we can’t understand how decisions are made.’ Meanwhile, serious questions remain over whether the new FDP system — regardless of whoever wins the contract — will actually help patients.

The NHS has form on commissioning computerisation schemes that fail. The vast National Programme for IT, which began in 2005 under Tony Blair to unite NHS systems, was branded a failure and dismantled completely in 2011, at a cost to the taxpayer of £10billion.

Cori Crider, a lawyer and co-founder of Foxglove, a UK-based group that campaigns against the unfair use of computerised data, told Good Health that a Palantir system, called Foundry, which is already being piloted in NHS hospitals, is having problems; she points to NHS data that ‘shows that of 36 trials of Palantir’s Foundry kit, at least 11 have been paused or suspended. I believe it’s because it didn’t work’, she says.

She adds that NHS computerisation efforts may also fail if patients opt out en masse or quit using NHS services. ‘Trust in public health is vital for public health to succeed. When people lose trust you see things such as vaccination-refusal break out,’ she says. A YouGov survey commissioned by Foxglove and the Doctors’ Association UK this year suggested that nearly half of adults who currently allow the NHS to use their data — some 20 million people — will refuse to continue if the FDP is introduced and run by a private company. 

Cori Crider says: ‘More than five million people are already opted out of sharing data, and once opted out, people tend to stay opted out. Such mass losses of data mean that the NHS can’t properly plan for things such as a new flu season.’

Even if patients are told that their data will be anonymised, she says: ‘AI can see through such attempts and join up data from different sources to identify individuals’.

In fact, it seems that patients won’t even be given the option to opt out of having their data input into FDP. Until this month, the NHS England website said it was looking at ways to ‘optimise’ the patient FDP opt-out process.

But now, without announcement, this has changed to say that patients ‘can only opt out of sharing their data for research and planning, not for direct patient care’. Steve Brine, the Conservative MP who chairs the Commons Health & Social Care Select Committee, told Good Health: ‘We heard substantial public concerns about trust, transparency and data security during our inquiry [earlier this year] on digital transformation in the NHS.

‘The Department of Health and Social Care has acknowledged it needs to do more to reassure people about the security of data gathered by the NHS and in communicating the benefits of digital healthcare.’

Meanwhile, other concerns have emerged over the Government’s relationship with Palantir.

In March 2022, the company provided six months’ free computer support to manage the Homes for Ukraine scheme. Then, without putting the work out to commercial tender, the Government awarded it a 12-month contract worth £4.5million to continue running the computer project.

Last week, the National Audit Office published a damning investigation, describing this as ‘a type of arrangement the Government Chief Commercial Officer (GCCO) subsequently warned against’.

It added that the GCCO has written to Palantir ‘noting his concern about the practice of offering services to public sector customers for a zero or nominal cost to gain a commercial foothold’.

In September this year, Palantir was given a further 12-month contract (worth £5.5 million) to run the Ukraine project.

Tom McArdle, health lead at Palantir, told Good Health that campaigners’ worries are misplaced. ‘We provide computer software — we’re not in the business of collecting, mining or selling data,’ he says. ‘Customers retain full ownership of their data. Palantir is granted no rights to it and can only carry out the processing it is instructed to do by the customer, with UK Government customer data only hosted in the UK.

‘Our track record working with some of the world’s most critical organisations on their most sensitive data, shows how we have world-leading security and data governance capabilities.’

He added that chairman Mr Thiel’s comments about the NHS were made ‘as a private individual. Our CEO, Alex Karp, has said he firmly disagrees’.

Palantir told Good Health that its Foundry system is live in 36 trusts, with 24 now ‘actively realising benefits’, which the Government describes as ‘treating patients faster’.

NHS England said: ‘[We are] conducting a fair and transparent procurement process for a supplier of the FDP, in line with public contracts regulations.

‘The NHS doesn’t take trust for granted, which is why the successful supplier of the FDP will operate only under the instruction of the NHS and will not control the data, nor will they be permitted to access, use or share it for their own purposes.

‘We have also put in place explicit safeguards to prevent any supplier gaining a dominant role in NHS data management.’

DYNAMIC DUOS: Nutrients that work best together

This week: Beta-carotene and fats:

‘Beta-carotene is a powerful, protective antioxidant found in a wide range of coloured fruit and veg, including carrots, apricots, mango, sweet potatoes and dark green leafy vegetables,’ says dietitian Orli Rhodes. ‘It’s vital for healthy skin, and eyes and immunity.’ 

As it’s fat soluble, beta-carotene is better absorbed when foods containing it are eaten with fat, such as olive oil, butter, avocado or nuts. 

It’s not heat sensitive: in fact, greater amounts become available when cooked. Try carrots roasted in olive oil; dried apricots stewed with spices, and full-fat yoghurt; spinach and kale salad with olive oil dressing and pine nuts.