Scroll down for
1: The NHS Data Grab
2: Action: Opt Out and Protest
3: Latest news: NHS data platform? Possible sell off? (23rd September 2022)
4: 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.
An excellent video from Double Down News
is here
2:
Action
****OPT OUT !!!!
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
Information from NHS Digital is here
Additional info from the campaign group 999CallforNHS is here
They make the point that “THIS IS NOT THE NHS GRABBING YOUR DATA – this is the Government / Dept. of Health / NHSEngland grabbing your data and making it available – to whom?”
AND PROTEST !!!! ****
Sign the Foxglove petition here “NO PALANTIR IN OUR NHS”
Sign the OpenDemocracy petition here NHS PATIENTS WANT PRIVACY, NOT PRIVATISATION
3:
Latest news: NHS data platform? Possible sell off? (23rd September 2022)
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.
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