Stop the plans to centralise NHS health data without consent

by Martha Dark

Stop the plans to centralise NHS health data without consent

by Martha Dark
Martha Dark
Case Owner
Just Treatment, Doctors’ Association UK and the National Pensioners Convention are the co-claimants in this case. They're supported by Foxglove.
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Martha Dark
Case Owner
Just Treatment, Doctors’ Association UK and the National Pensioners Convention are the co-claimants in this case. They're supported by Foxglove.
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This case is raising funds for its stretch target. Your pledge will be collected within the next 24-48 hours (and it only takes two minutes to pledge!)

Latest: Dec. 11, 2023

Update: no legal basis for the Federated Data Platform – legal case launched!

Just Treatment, the Doctors’ Association UK, and the National Pensioners Convention, supported by Foxglove have launched a legal challenge to the NHS Federated Data Platform (FDP).

The FDP will …

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The government is about to slip through the biggest grab of patient data in NHS history – and we have less than three weeks to keep our medical data safe. 

On 23 June, unless we can force the government to pause this plan, the full GP records of every man, woman, and child in England will be scraped and sent into a central database. Our health information could then be made available to other parties – some of whom may use it for financial gain.

The government says you can opt out – but most people have never heard of this scheme and will have no chance to opt-out in time. And if you opt out too late, too bad – your health data will be in there forever.

So we have to take the government to court. It’s our health data, so what happens to it should be our choice. We’ve formed a coalition of five organisations and an MP to take this scheme to court and stop the NHS data grab. But time is of the essence, and we need your help.

If the government won’t drop its 23 June deadline, we need to go to court for an urgent injunction – in about a week.

Your health records being taken are highly sensitive. They include information on things like depression, autism, sexually transmitted infections, erectile dysfunction, and addiction – all to be made available for planning and research, including commercial research. The data is ‘pseudonymous’, but this is quite different from anonymous. It means peoples’ identities will be disguised but could later be re-identified. The government has said little about what safeguards will protect this info – or on what terms corporations will access it.

We support the use of patient data for planning and research in ways that keep faith with patients and support the NHS – but the government’s rushed and opaque process has violated patient trust.

We can beat this, but we’ve got to move fast. Please support our crowdfunder with whatever you can afford to help us force the government to halt the GP data grab, and to rethink and seek meaningful patient consent.

What is the legal challenge?

On 3 June Just Treatment, Doctors’ Association UK, the Citizens, openDemocracy, the National Pensioners Convention and David Davis MP sent a legal letter (a letter before claim) to the Department of Health and Social Care and NHS Digital. The legal letter says that rushing such a major change through with no transparency or debate violates patient trust, and doing so without seeking patient consent is unlawful. The case asks for a halt to the GP data grab with an injunction, and to rethink and seek meaningful patient consent.

Why do we need to raise money?

We are launching a crowdfunder to cover the cost risks associated with the case. Our legal team work on ‘conditional fee agreements’. That means they only recover their costs from the other side if we win. But if we lose in court, we could have to pay the other side's costs. The claimants in this are asking the court for a “Cost Capping Order”. If the court grants that it means that there would be a limit on the amount the coalition can be forced to pay in the event it loses. To make this case possible we need to raise as much as possible.

What happens to funds raised if we don’t spend it on legal fees?

If for some reason we don’t need to spend all the donations on this case or if we don't end up in court you can request a refund. Should you choose not to request a refund the donations will be split evenly between the claimant organisations and Foxglove.

We have launched a petition to support this case: https://www.foxglove.org.uk/nhs-data. Please sign and share.

The team

Just Treatment, Doctors’ Association UK, all the Citizens, openDemocracy, and the National Pensioners Convention, as well as David Davis MP, are the co-claimants in this case. That means they are together taking the government to court.

They are supported by Foxglove. Foxglove is a non-profit that exists to make tech fair.

Our case is being taken by a fantastic team of lawyers, including Rosa Curling at Scott-Moncrieff & Associates and Director of Foxglove, Robert Palmer QC of Monckton Chambers and Julianne Kerr Morrison of Monckton Chambers.

Update 7

Martha Dark

Dec. 11, 2023

Update: no legal basis for the Federated Data Platform – legal case launched!

Just Treatment, the Doctors’ Association UK, and the National Pensioners Convention, supported by Foxglove have launched a legal challenge to the NHS Federated Data Platform (FDP).

The FDP will be the largest centralisation of our health data in the history of the health service. Our case argues the government has no legal basis to go ahead with these plans. They need to come back to parliament and consult the public about how they propose data will flow in the FDP.

We’ve asked the government to urgently explain how the FDP will comply with the law. If they refuse, we’ll see them in court. The Guardian covered our most recent legal letter and you can read their story here.

Last month, despite much controversy and opposition from unions, doctors and patients, the government awarded the £330 million contract to run the FDP to US spy tech company Palantir. Palantir may have won the contract, but the fight to ensure NHS data is used only for the good of the NHS continues.

In the past two decades multiple NHS data projects have failed, from the 2002 National Programme for IT, to Care.data in 2014 and finally GDPDR or the ‘GP Data Grab’ – which together with you - we managed to stop in 2021. All these projects failed because the government didn’t shore up sufficient patient trust and millions of people opted out of sharing their health data.

To avoid another round of opt outs and to maintain public trust the government must seek patient consent and make iron clad commitments that our NHS data will never be shared with private companies without consent and that there won’t be data sharing or other parts of government, like the Home Office or the Department for Work and Pensions.

To date, the government has flip flopped on whether patients can opt out of the FDP at all. The frequently asked questions on the NHS’s website suggests that patients cannot opt out of this system.

We believe that with appropriate public engagement and patient consent, most people would support and encourage improved use of health data. Done right, the FDP could drive improvements to health care and present huge opportunities for the NHS and for patients. But done wrong, we risk another expensive failed IT project that damages the sacred relationship of trust that must exist between patients and doctors.

We will be in touch with another update on this case as soon as we have one. Thanks for continuing to follow and support this, please continue to contribute what you can and share the page.

Note: This Crowdjustice page was launched to challenge GDPDR or the ‘GP Data Grab’ in summer of 2021. Together we successfully paused those plans; and the Federated Data Platform is the government’s latest attempt to centralise health data. While these plans are slightly different to the GP Data Grab, many of the same issues apply. So if this case ends up in court, we wish to use the funds from this Crowdjustice page for the cost risk Doctors’ Association UK, Just Treatment and the National Pensioners Convention could face in this challenge to the lawfulness of the FDP. If you donated to the original challenge to the GP Data Grab and you DO NOT wish for your donation to be put towards challenging the FDP, please email [email protected]

Update 6

Martha Dark

July 13, 2023

Palantir and the £480 million Federated Data Platform – new legal letter sent

The Doctors’ Association UK, Just Treatment and the National Pensioners Convention have sent a further legal letter to the government about the plans to centralise all UK health data into a new database, the “Federated Data Platform” (FDP).

The FDP has been described “as an operating system for the entire NHS,” and it would form the largest health database ever created in the UK. The FDP isn’t the government’s first attempt to centralise health data, you all supported our campaign challenging the most recent failed attempt GPDPR or the “GP Data Grab,” in 2021 which led to millions opting out of sharing data with the health service in less than 1 month. The plans for the FDP are similar, indeed it was recently confirmed in Parliament that as before, our GP data will be fed into the platform.

Right now, the government is running the procurement process for the management of the FDP that is due to end in September. US spy-tech firm Palantir is widely considered the bid frontrunner and the value of the FDP contract is now a whopping £480 million!

Palantir mainly has a history in military, security, and policing – not health. Palantir’s chair, Peter Thiel recently described British love of the NHS as “Stockholm Syndrome” adding: “In theory, you just rip the whole thing from the ground and start over.” Despite this, Palantir has already been working with the NHS on pilots. In March, a parliamentary question from David Davis MP revealed that at least eleven of the Palantir pilots have been suspended or paused, yet the government has failed to explain what happened, what went wrong and what is being done to ensure Palantir’s systems are value for money and fit for purpose.

A recent YouGov poll illustrated current public opinion about the plans. The results showed that if the FDP is brought in and run by a private company – like Palantir – 48% of adults in England who have not yet opted out are likely to do so. That would mean more than 20 million people stopping sharing their health data, except for direct care, with the NHS. If even half that figure stopped sharing their health data it would be catastrophic for the future quality of NHS data – one of the most precious health resources we have as a country.

Doctors Association UK, Just Treatment, and the National Pensioners Convention, supported by Foxglove sent the most recent letter because, despite multiple requests, we still don’t have all the information we need about exactly how this platform will work, if and how the public will be consulted and whether the government will seek patient consent before they completely overhaul the way our most sensitive health data is managed. We are demanding urgent answers.

We believe that with appropriate public engagement and patient consent, most people would support and encourage improved use of health data. Done right, it could drive improvements to health care and present huge opportunities for the NHS and for patients. But the past is littered with failed NHS data projects and if the government fails to seek consent from the public again, the FDP risks doubling down on past mistakes.

If we don’t receive the information we need, or if our concerns about consent are not satisfied, we will launch a judicial review. If this case ends up in court, we will use the funds from this Crowdjustice page for the cost risk Doctors Association UK, Just Treatment and the National Pensioners Convention could face.

Thank you for being part of it and we will keep you updated as this case progresses. In the meantime, we’re asking the public to help raise concerns about the plans with their MPs and to share a report detailing concerns. Please join us in doing so here.

Update 5

Martha Dark

Dec. 16, 2022

New Developments - The Federated Data Platform

In August, we updated you that, together, we had successfully fought off the NHS Data Grab. In the face of a public outcry, petitions, and this legal challenge, the government changed their plans. They scraped the deadline for patients to opt out and they put the whole scheme on hold.

There have now been important further developments. The government announced new plans for a £360m “Federated Data Platform”. There’s little information about how this platform will work. But it appears to be another attempt to do many of the things last year’s NHS Data Grab would have done - and more.

On top of that, Peter Thiel’s spy tech firm Palantir appears to be deepening its reach into the NHS with the ‘Faster Data Flows’ pilot. This pilot appears to involve a transfer of sensitive health data from acute trusts into Palantir’s Foundry system without patient consent, consultation, or transparency. The data will include patient’s NHS numbers, date of birth, and postcode.

We are very concerned about these developments. Particularly the lack of public information about these plans: what is this for, how will it work and how can we be sure our data will remain safe and protected? That’s why the Doctors Association UK, Just Treatment and the National Pensioners Convention, supported by Foxglove, have sent a legal letter to NHS England asking for urgent information about these new proposals.

There are many unanswered questions. We will keep you updated as this progresses. If this case ends up in court, we will use any funds raised for the cost risk Doctors Association UK, Just Treatment and the National Pensioners Convention will face.

The Citizens and openDemocracy have decided not to be part of this litigation but are happy for all funds raised to be put towards this case. As before, if the claimants don’t need to spend all the donations on this case or if we don't end up in court you can request a refund. Should you choose not to request a refund the donations will be split evenly between the original group of claimant organisations and Foxglove.

We encourage you to write to your MPs about these new plans. Please consider doing so here: https://www.foxglove.org.uk/campaigns/dont-hand-nhs-patient-data-to-palantir-email-your-mp/.

We will keep you posted as this case progresses. Thank you for being part of it.

Update 4

Martha Dark

Aug. 6, 2021

Update on the NHS data grab

We’ve had a breakthrough. In the face of a public outcry, petitions, and this legal challenge, the government has announced changes to its new NHS database - including scrapping the deadline for patients to opt out.

They’ve also binned the ludicrous system where an opt-out only stopped your data being taken in the future - but your lifelong health record stayed in the system.

Taken together - if the promises hold - these changes reduce the threat of patient data being taken without people’s consent. Opting out of the new NHS database should now actually do what it says on the tin.

However, some big concerns remain. It’s still not clear – and the government haven’t explained - why a massive central database is the best way to get the greatest benefit out of our health data for all of us. Neither is it clear how to make sure private companies can’t exploit our GP data in ways that harm the NHS. We’re examining both of these problems in detail and will update you soon on the next steps.

We’re not letting this go. The next phase of this fight is about the future of the NHS. That future could be bright - if we demand it. We’ll need as many as possible of you for that fight, so please forward this onto anyone you know who cares about the NHS. You can sign up to follow the case here

Update 3

Martha Dark

June 22, 2021

We're over halfway to our target and our case is needed now more than ever!

Today the government released a draft strategy setting out plans to change how they use our NHS data. Yet, the detailed 91-page plan contains just one paragraph addressing the future of the GP data grab.

This has left us with more questions than answers. The plans still don’t give patients a real choice and we don’t know enough about what corporate access is being proposed to our health data.

With your help we’ve already forced the government to pause the collection of 55 million people’s health data for two months. The public now have until 25 August to opt out. That delay is a win – but the additional time must be used by Matt Hancock to tell us more.

The paper published today has failed to do that. So we are urgently preparing the next steps in our legal case. We’ve got just 11 days left to reach our fundraising target. Without the necessary funds, we won’t be able to issue proceedings.

Together we’ve managed to make the government re-think their plans. But we’ve more to do. Please donate whatever you can afford and share this page with your friends and family. Every penny counts. Thanks for being part of it.

Update 2

Martha Dark

June 8, 2021

Update - Government Delays #NHSDataGrab

Today the government announced it is extending the deadline for people to opt-out of the #NHSDataGrab. They’ve moved the deadline to September! This is a partial victory - it means that they’re doing some of what we’ve been asking for – they’re going to use this time to talk to patients, doctors, health charities and others to strengthen their plan instead of just rushing into it.  

This is an important step, but we still have a lot of questions that we need answers to: how will patients be notified, including people who aren’t online? They are promising to store our health data in a “trusted research environment” - but how will that work, who gets access and on what terms?  

The government may be hoping that this delay means people lose interest – so we need to keep up the pressure and stay laser focused on protecting privacy and preventing privatisation of our NHS data without people’s say so.  

We don’t have all the answers yet, but we will keep you updated as this case develops in the next few days. 

This is only thanks to the public pressure we’ve all created – thanks for being part of it. 

Update 1

Martha Dark

June 7, 2021

We are over halfway there!

We are over halfway to our fundraising target, thank you.

With your help, a huge chorus of people have called for the halt of #NHSDataGrab and to fix this mess. Friday night, we learned even one of the defendants, NHS Digital, appears to agree a pause is needed. The other, the Department for Health and Social Care, however, is not budging!

Unless the Department for Health and Social Care does the right thing, and agrees to delay the opt out deadline and to rethink the scheme - we will have no option but to go to the court and seek an urgent injunction.

This means we need to raise as much money as possible by Friday the 11th June.

Together we can beat this. Please chip in anything you can afford and share this page with your friends and family.  

Thank you for being part of this case. Let’s stop the #NHSDataGrab.

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