Nhs Data Opt-out

Bwood_Horn · May 26, 2021

The government's plans to allow a US data giant blanket access to our NHS records for "...research and planning..." have finally made it out of the specialist press and into the mainstream media:

...The NHS will make every patient record in England available to academic and commercial third parties for research and planning purposes.

England’s NHS is preparing to scrape the medical histories of 55m patients, including sensitive information on mental and sexual health, criminal records and abuse, into a database it will share with third parties. The data collection project, which is the first of its kind, has caused an uproar among privacy campaigners, who say it is “legally problematic”, especially as patients only have a few weeks to opt out of the plan.

NHS Digital, which runs the health service’s IT systems, confirmed the plan to pool together medical records from every patient in England who is registered with a GP clinic into a single lake that will be available to academic and commercial third parties for research and planning purposes.

Cori Crider, co-founder of Foxglove, a campaign group for digital rights, said: “We all want to see the NHS come out of the pandemic stronger” but noted that the NHS had been “completely silent” on who would have access to the data. “Is it pharma companies? The health arm of Google Deepmind? If you ask patients whether they want details of their fertility treatment or abortion, or results of their colonoscopy shared with [those companies], they’re not going to want that,” she said. Foxglove has issued a legal letter to the Department of Health and Social Care, questioning the lawfulness of the plans under current data protection laws, and threatening further legal action. Rosa Curling, a solicitor at Foxglove, wrote in the letter that she had “serious concerns” about the legality of the move because no explicit consent had been given and “very few members of the public will be aware that the new processing is imminent, directly affecting their personal medical data”.

Patients have until June 23 to opt out by filling in a form and taking it to their GP before their historical records will become a permanent and irreversible part of the new data set. Patients who opt out after the deadline can stop future data from being funnelled into the new system. The plan to create a new data set was announced by Matt Hancock, health secretary, in early April and publicised mainly on blogs on the NHS Digital website, and through flyers at GP surgeries, said NHS Digital, which added that the plans had been in the works for three years. But Phil Booth, founder of advocacy group MedConfidential, said: “They’re trying to sneak it out, they are giving you six weeks nominally and if you do not act based on web pages on the NHS digital site and some YouTube videos and a few tweets, your entire GP history could have been scraped, never to be deleted.”

He added that the NHS had “opaque” commercial relationships, often through middlemen, and that it would be difficult to trace who ultimately sees the data. NHS Digital says on its website that it publishes a monthly register of who it has released data to, and whether the data is anonymised or not. Data that directly identifies patients will be replaced with unique codes in the new data set, but the NHS will hold the keys to unlock the codes “in certain circumstances, and where there is a valid legal reason”, according to its website. NHS Digital said the Information Commissioner’s Office, the UK’s data regulator, had not objected to its plans, and that it was in the process of delivering a data protection impact assessment. The plan comes following an attempt in 2013 to extract GP records into a central database, called the Care.data programme, which was abandoned in 2016 after complaints about confidentiality and commercial use.
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Pressure group foxglove's legal action forced the government to change its plans and now you have to right to opt out of the 'service'.

I notice both foxglove and the FT mention the 23rd June but the Official NHS digital site mentions only 30th September on its mythbusting webpage BUT I've just listened to an official spokesperson from NHS Digital on R4 and he didn't correct the 23rd June date.

Official opt out page here.

@mods I don't think that this belongs in the politics section but please feel free to move.

hornmeister · May 26, 2021

Thanks for posting and I urge people to read the NHS site because there's a lot of misinformation out there. I'm in two minds about this.

If it's policed as they say it will be then the data is to be used for purposes to improve healthcare and research and should be anonymous.
The track record for successive governments on keeping personal data secure is not good.

Personally I have nothing on my record I worry about other people knowing if they do break the rules I may be able to sue.

miked2006 · May 26, 2021

They should really release more detail on what will be shared, so we can gauge how identifiable it is, as well as what they plan to do with the data.

If Cancer Research have my medical history but only receive a key instead of a name and see I'm a 30-35 year old male in Beaconsfield, then clearly that's fine.

If they see I'm a 30 year old, and have the first part of my postcode (probably the most likely) then I'd be wary, but understand that big data will likely solve more diseases than guinea pigs in the 21st century, and the NHS must be one of the largest heathcare databases in the world.

If they want to offer my full name, address, GP name etc then I'd want a clear indication of this, the ability to opt out every time, a ban on individual data being shared/ migrated outside of a password protected system and a way of reviewing what my data has been used for.

Clive_ofthe_Kremlin · May 26, 2021

Ha! As though those big US giants don't already know everything about you, down to the brand of paper you wipe your arse with.

Ybotcoombes · May 26, 2021

As above we are already ****ed, the time to worry about personal data was about 10 years ago (not that we shouldn’t keep trying)

my guess would be they will start to use the data to identify key indicators that can lead to chronicle lines and then rather than use that to help people, sell it to insurance companies so they can avoid insuring you.

La_tempesta_cielo_68 · May 26, 2021

Unless or until WM decides to introduce new data laws, current GDPR means there can be no such concept as a deadline to opt out of the principle of privacy.

I haven't read up on this story but assume the data is being obfuscated so that the individual cannot be identified, as otherwise this would be illegal as it would be sharing data without the owners consent, and also probably fail on other constraints as well eg not time limited, not clear understanding of what happens to the data etc.

A 3o second search turned up the you gov site with what looks like the ability to opt out online for those particularly worried.

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Nhs Data Opt-out

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