NHS Data Grab – archive page
US spy technology firm Palantir win £330m NHS Contract.
We don’t trust them with our health data,
and we don’t trust them to respect the values of our NHS.
Scroll down for
1: The NHS Data Grab
2: Action: Sign these petitions NOW
3: Latest news: US firm awarded £330m national data contract / Read our email to North East and North Cumbria ICS – No to Palentir (scroll to 16th Nov 2023)
4: Expert analysis
5: Links
1:
NHS Data Grab
What’s happening?
from OpenDemocracy – more information is here
The Government is trying to slip through a massive change to how NHS patient data is handled. It wants to take the patient records which GPs hold on everyone in England, and enter them all into one massive database. And it wants to make this data available to “third parties” – including private companies.
This plan would mean incredibly sensitive data about all of us who use the NHS – including sexual health, mental health, criminal records – being pooled and shared.
The plan was announced quietly, via a single website. Health data could be used for the good of the NHS. But any changes to how our health data is handled must be done in a transparent, trustworthy, legal way. The scheme is being rushed through by stealth. Patients have been denied a meaningful say in what happens with their data. No safeguards have been included to prevent private companies using our data for their own profit.
Dodge the NHS Digital Data Grab
from Open Rights Group – more information is here
NHS Digital is planning to transfer the sensitive medical histories of over 50 million patients registered at GPs in England to a database accessible by commercial third parties. Protect your medical data by opting out today.
The data will include diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, appointments, information about physical, mental and sexual health, data on sex, ethnicity, sexual orientation and more.
Though names won’t be collected, this data will only be pseudonymised. This means it will still be possible to identify patients by cross-referencing data like postcode, age and diagnosis.
The official line is that sharing this data will aid in the research and development of cures for serious illnesses, but the Government has a lot to gain by selling access to companies too. The secretive way that NHS Digital is going about this will only undermine public trust amidst an ongoing health crisis
NHS data – an incredibly valuable public asset
From Foxglove – more information is here
The NHS holds a huge amount of health data. In fact, it’s the largest set of structured, machine-readable health data in the world. The data is so good thanks to the fundamental values of the NHS as a health service that cares for everyone – that means the data covers all of us, across the UK, regardless of wealth or background.
Responsible use of this data can be of huge benefit, helping improve care and develop new treatments. Patient data has helped the response to Covid, and, with proper safeguards to protect the public interest, more could be done in the future. One estimate of the value of patient data to the NHS puts it at a staggering £10 billion per year.
An asset to be stripped?
Private corporations have also spotted the value of NHS data – and are keen to cash in. They are seeking contracts from the government to provide outsourced data services to the NHS. These contracts can be lucrative in themselves – Palantir’s latest contract is for £23million – but the even bigger prize is access to the data itself. Many companies see public data as a resource they can exploit to develop highly profitable new products and services.
National KONP Health Data Working Group – providing additional information on the “Data Protection and Digital Information Bill “
The KONP Data Working Group aims to provide analysis and a range of materials to support campaigning against the privatisation of personal health data, and to highlight the non-exploitative alternatives that exist.
for further information and links from National KONP
for suggested actions
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2:
Sign these petitions NOW (and circulate / share)
Sign the Foxglove petition here “NO PALANTIR IN OUR NHS”
Sign the OpenDemocracy petition here NHS PATIENTS WANT PRIVACY, NOT PRIVATISATION
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Latest news
11th January 2024: News update from Foxglove
Click here for the latest developments
30th November 2023: NHS England faces lawsuit over patient privacy fears linked to new data platform
The trust that is vital to good patient care & the whole of the health system is being trashed by the government’s strategy to force this through: four groups claim no legal basis exists for setting up the Federated Data Platform which facilitates information sharing.
21st November 2023: US firm awarded £330m national data contract
From “Just Treatment”:
“After months of delays – that you helped to secure – the government has just confirmed that the contract for the NHS Federated Data Platform has been awarded to US spy tech company Palantir. I know that, like all of us in the Just Treatment team, you will have deep concerns about this news and what it means for the future of our NHS and your health.
Patient trust is absolutely critical to any public health system. In pressing ahead with this hugely controversial plan, the government has violated the trust of millions of NHS patients. This could have serious implications for how people choose to engage with NHS services going forward.
For months our movement has fought to expose and challenge these plans. We’ve lobbied politicians, submitted petitions, spoke out in the press and so much more. I want to thank you for all that you have contributed to this huge effort. We know that the government felt pressure from us along the way. But shamefully, they chose to prioritise the interests of private corporations like Palantir over the concerns of the people they’re supposed to represent.
However, this is not the end of the road. Because of the federated nature of the data platform, local trusts and ICS bodies across the NHS in England each have to make a call on whether or not they will participate in it. There are still many unanswered questions about exactly how the FDP will be implemented. We will keep doing all we can to fight for transparency, proper patient consent, and an end to health profiteering. We are digesting today’s news with our partners Foxglove, the National Pensioners Convention and the Doctors Association UK, and will share more soon on the legal challenge to these plans that we’ve been pursuing together.”
From Foxglove:
“I’m afraid it’s bad news. The government has just announced that they’re giving the NHS Federated Data Platform contract to Palantir. Foxglove and partners have fought these plans tooth and nail for months. Thousands of you got involved in the campaign. You signed petitions, wrote letters to MPs and ministers, spread the word, and donated to fund the work. Dozens of other organisations representing patients and NHS workers worked alongside us in the Stop Palantir coalition.
This is a huge setback. But it isn’t over. Palantir may have won the contract. But HUGE questions remain about how the NHS Federated Data Platform will work. Foxglove will fight for safeguards to limit the damage caused by giving such a shady company this role in our NHS. And we will fight for patients to be given real choices in how their data is used in the new system – including a right to opt out of their data being exploited by private companies. We will also continue our legal challenge with Just Treatment, the National Pensioners Convention and the Doctors’ Association UK. More on that soon.
Today’s announcement was initially due in September and the repeated delays, reportedly due to concerns about public opposition, gave us hope. We knew how entrenched support for Palantir was at the top of government – but we hoped last week’s change of Health Secretary could mean a change of position. Ultimately, though, it wasn’t quite enough. Palantir ran a slick and expensive lobbying operation. They also took full advantage of the pandemic, getting themselves in prime position for this multi million pound contract by originally offering their services for a covid project for just £1. This time, the Big Tech corporation won.
We can still be proud of everything we’ve done to date. We’ve managed to create real friction around the deal, and to force Palantir onto the defensive. We started this work during the pandemic, when Palantir first won a no bid contract to manage our Covid related NHS health data. Since then and together with partners we’ve forced the UK government to publish secret Covid-related contracts between tech firms (including Palantir) and the NHS and to consult the public before extending those ‘data deals’ beyond the pandemic. We launched the #NoPalantirInOurNHS coalition with over 40 other groups and published a detailed report into the risks with the deal – which thousands of you emailed to your MPs. We’ve also continued to raise concerns and questions across parliament including with the chair of the influential Health Select Committee.
Palantir may have won this contract, but a huge amount is still at stake. We will be back in touch soon with an update on the next phase of the campaign – and how you can help.”
Tuesday 21st November 2023:
to read the Guardian article about concerns re patient privacy (Tuesday 21st November 2023)
Monday 20th November 2023:
to read the article in the Guardian (Monday 20th November 2023)
18th November 2023: NHS info
Information from NHS Digital is here
16th November 2023: Read our email to North East and North Cumbria Integrated Care Board – NO to Palentir
We will keep you informed of all responses.
12th July 2023: NHS Crisis: Who Profits
Talk given by Martin Blanchard (KONP data Working Group / Doctors in Unite) for the ‘NHS Crisis: who profits?’ meeting KONP Merseyside 12th July 2023
July 2023: Lobby your MP
to send a formatted email to your MP
23rd September 2022: NHS data platform? Possible sell off?
From Foxglove:
Last year, thousands of you from across the UK backed our coalition’s campaign to stop the NHS Data Grab. In the end, over a million people – including the government’s own health data guru Dr Ben Goldacre – opted out of the scheme, forcing it to be scrapped.
Having failed in their attempts to pool GP data in the NHS Data Grab, the government is now taking a different route. They recently announced plans for a ‘Federated Data Platform’: a vast new £370m health data system with spy-tech firm Palantir as the front runner for the contract. What’s it for? Details are murky – but the plan seems to be for more and more control over your health records to be taken from caregivers, like your GP, and put in the hands of central government decision-makers at NHS England. Don’t be fooled by the branding – these folks are officials, not clinicians.
Some doctors fear this will jeopardise the doctor-patient relationship. Sure, some aspects of care can be centrally managed – most people don’t mind getting a text to book a Covid vaccine appointment. But what about when a central government department starts asking you about weight management? Or teen contraceptives? Some things we just want to talk about with a doctor – face to face, in private.
Foxglove and our partners Just Treatment, The Doctors’ Association UK and the National Pensioner’s Convention have serious concerns about these plans for our NHS health data. That’s why we’ve sent an initial legal letter. Once central government can access this data under the umbrella of giving us ‘care’, without super-careful safeguards, it’s a slippery slope before access is given to private researchers for profit.
Foxglove’s mission is to stand up to tech giants and governments, and work for a future where technology is used to benefit everyone, not just the rich and powerful.
13th April 2022: Private Company in line to run NHS data platform? Possible sell off?
17th September 2021: A further update from Foxglove
15th September 2021: Not all good news – a warning from National KONP
22nd August 2021: An update from The Observer
Summer 2021: Opt-Out process
Information from MedConfidential about the opt-out process is here
You will need to fill out the opt-out form here and take this to your GP
23rd July 2021: Big breakthrough – An update from Foxglove
“We’ve had a big breakthrough. In the face of a public outcry, huge petitions, and a crowd-funded 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, these changes massively reduce the threat of patient data being taken without patients’ consent. Opting out of the new NHS database should now actually do what it says on the tin. This is a direct result of our collective campaign efforts. So a huge thank you, and congratulations, to all of you who got involved…..We’re very proud to be part of the coalition working on this, alongside: Just Treatment, the Doctors’ Association UK, the National Pensioners Convention, the Citizens, openDemocracy and David Davis MP.
However, there are some big remaining concerns – including about the role of private corporations in the new NHS database. We’re currently examining these in detail. A health minister told MPs in parliament this week that the existing system for deciding who gets access to NHS data is “onerous” and “long-winded” and that it was “a drag anchor on progress”. That sounds like he may want to weaken the rules granting private companies access. The minister also wouldn’t commit to writing to every NHS patient to tell them about the changes to GP data. That could leave some people, particularly older and more vulnerable patients, without a meaningful chance to opt out.
We’re not letting this go. We’re consulting with our partners in this case, and others, and will be able to update you soon on the next steps. Watch this space!”
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4:
Expert analysis
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5:
Links
Bloomberg UK (30th September 2022) Peter Thiel’s Palantir Had Secret Plan to Crack UK’s NHS: ‘Buying Our Way In’
OpenDemocracy (4th June 2021) Legal threat sharpens over UK government plans to harvest patient data from GPs
The Guardian (30th May 2021) The Guardian view on medical records: NHS data grab needs explaining
konpnortheast.com 