5 reasons we are fighting the NHS data grab
* 8TH JUNE UPDATE: As a result of our coalition campaign, these plans have been delayed until September! But the fight is far from over - read on to hear more about our concerns and why we are challenging the government on this issue. *
The government is trying to rush through a huge change in how your GP records are handled - centralising the health data of 55m patients and letting profit-making companies loose on it. And it feels as if the government were hoping no one would notice it was happening until it was too late - giving everyone just six weeks to opt with barely any effort to inform the public.
Well, we did notice. And now - along with Foxglove, openDemocacy, the National Pensioners Convention, the Citizens, and Conservative MP, David Davis, Just Treatment are taking the government to court to force them to rethink their plan and give everyone in England affected by this change a chance to understand what is happening and whether they want their data shared.
Here are the five reasons we are fighting to stop the GP data grab and keep big tech’s hands off our health data.
No one knows it's happening - when we reach out to our patient leaders no one had heard a thing about this plan. All of us were shocked and angry - it is completely wrong for 55m peoples’ data to be collected in this way without their consent. The government seems to have made it deliberately hard for us to say no.
No one knows which companies will be able to use it and why - the government have already handed contracts for NHS data to infamous companies like Palantir - a US data company with links to Donald Trump and who have been criticised for their human rights record by Amnesty International. If they are allowed access to our health data how low has the bar been set? And we know almost nothing about restrictions that might be placed on how those companies use our information.
The privacy safeguards aren’t good enough - whilst the government say your name will be removed from the data, that isn’t permanent and, under very vaguely explained circumstances, they say they will reverse this allowing your name to be linked to your health records. There is a long history of tech firms and government breaching people's privacy. This plan seems like a recipe for a data disaster.
If you miss the deadline your data gets hoovered up and you can’t undo it - let’s say you are an amazingly switched on person and you manage to find out about what is going on, decide you don’t like the plan and decide to get yourself opted out. As it stands, if you miss the deadline your historical data gets sucked up anyway and you can only stop them taking future GP records. You can’t reverse the decision. This seems totally unjust.
This could make the NHS reliant on profit making tech and health corporations forever - many people see health data becoming as important a part of healthcare as surgery. It holds great promise. But if we allow this huge new area of medical care to be dominated by private companies, the NHS will become more and more dependent on them and their profit-driven business model. What hope do we have of ever returning to the NHS as a truly public health service if everything they do relies on Google, Amazon, and Palantir?
Please add your voice to the campaign to demand Matt Hancock stops putting private company profits before NHS patients’ privacy rights. Take action by:
And spreading the word!