Thread by @Foxglovelegal

⏰BREAKING: HMG quietly rolled out a scheme to seize - & sell access to - the health data of every man, woman, and child in England. Patients weren’t asked.
Legal issues? We think so. So we helped @JustTreatment send a legal letter.
@madhumita29 in @FT: ft.com/content/9fee81…

In many ways, this fight is about the future of the NHS.

The NHS sits atop the most valuable trove of health data in the world. Why? For years, your GP record has been stored not in doctor's scrawled notes but using GP codes, which a computer can 'read'. (h/t @marcus_baw)

This makes NHS health data of *massive* interest to researchers. So far, so good - we all want the NHS to come out of the pandemic stronger.

But there are issues: who gets access? On what terms? Who can patients trust? And who benefits – us, the NHS, or private companies?

We’ve been here before.
Groups like @medConfidential – who sounded the alarm here – beat back the last flawed effort to centralise GP data.
Look up ‘care.data’. HMG didn’t assure patients data wouldn’t be accessed for profit - so millions opted out. It collapsed.

We’re worried the government’s taken the wrong lesson from care.data – not to go carefully, but to rush this through and hope people don’t notice. That's undemocratic - and it betrays the trust people put in the NHS.

(Want to opt out? See medconfidential.org/how-to-opt-out/)

We think hiding from this debate is silly and may be unlawful.

Patients are open to the use of their health data – to benefit the NHS, in ways they can trust (ie without toxic firms like Palantir). They're less keen on Big Tech and Big Pharma profiting off the NHS.

We truly hope it won’t be necessary to litigate. The gov't could see sense and talk to folks. But it’s not OK to slip this by without a full debate about what we want done with our health data – and what we don’t.

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