Stop the NHS GP Data Grab
Stop the NHS GP Data Grab
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: 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 fo…Read more
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.
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.
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.
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.
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.
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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