What’s going on with GP data?

By Phil Booth

On 12th May, the Government announced it would be taking a copy of the lifelong medical history of every GP patient in England – adults and children – from 1st July 2021, and making this data available to third parties for payment.

They say they “don’t sell the data”, but here’s this year’s price list. They try to pretend it’s “anonymous”, but it isn’t.

While some uses of our GP data would be entirely legitimate and ethical, those third parties – including ones that already get NHS patients’ hospital data – encompass commercial interests, including companies that then (hidden from view) service their own customers in the pharmaceutical, device and data industries.

Less than a month after it was announced, Matt Hancock’s sneaky GP data grab was ‘paused’ for two months until 1st September 2021 – the point at which uploads of patients’ GP data are currently scheduled to commence.

Labour’s and Union responses to the GP data grab have been ahead of the political curve.

In the House of Commons, Shadow Secretary for Health and Social Care Jon Ashworth called for a pause the week before the Government did pause. And Dawn Butler held Matt Hancock’s feet to the fire over his plans.

In the House of Lords, Lord Hunt asked why the process for opting out your children involves having to print out and fill in a form, then post it to a Government office. In response, Lord Bethell announced “a review” which at this point seems non-existent, but has a long list of questions to answer.

But objections to this programme are not partisan; Baroness Cumberlege (Conservative) asked the original questions in the Lords, and Baroness Brinton (Liberal Democrat) went on to show that the legally-required Data Protection Impact Assessment (DPIA) for the programme was not only unpublished but unpublishable.

NHS Digital – the central body that Matt Hancock has ordered to collect all the data – has said the DPIA will be published “when it is ready”. The only conclusion one can therefore draw is that it is not ready, and that the Government blundered ahead regardless of how unprepared and potentially how unlawful it was.

While Government cronies used the pandemic to line their own pockets, the data ghouls and ‘AI mercenaries’ that hang around the former office of Dominic Cummings see our GP data as their next feeding frenzy.

Profiteering PPE middle-men were only interested in making money. The consequences of their actions were personal to those who lost loved ones, which no action can return. But your medical records are personal to everyone, and there are actions that people can take.

The Government is right that data can help save lives. But medical data can, and is, also used to do other things – like target oxycontin at the most vulnerable, get them hooked, and cause a drug epidemic, as in the US.

Is this the way we want our GP data to be used?

Patients have a right to see all of the uses of their data, and to make an informed choice about what is right for them and their family.

Matt Hancock promised “the most digital NHS”, but when it comes to protecting your data, he’s all in favour of paper forms and postal mail – because each step makes it harder for people to express their choice.

Lord Hunt was correct to ask why, in 2021, a decade or more after GP online services began, and years after the NHS App was launched (not the COVID one) you still cannot do an online opt-out for your dependent children, who live with you in the same home, who are registered at the same GP, in the same way you can opt out yourself.

Matt Hancock is a fan of Babylon Health’s “GP at Hand” app – indeed, he uses it as his GP. But his app of choice appears not to offer any way on your phone to exercise your legal right to dissent. Wannabe-billionaire Ali Parsa’s Babylon knows very well the value of its patients’ data, and apparently doesn’t want to let patients object to it making that money.

Is that this Government’s vision for the digital NHS of the future?

With an ‘adjournment debate’ on the GP data grab scheduled for Thursday 24th June, we hope to see Labour pick up the baton in the Commons and run with it.

In the meanwhile, if you have concerns, you can take action NOW. The Government hasn’t made it easy, but all the information and links to the forms you need are on medConfidential’s ‘How to opt out’ page:https://medconfidential.org/how-to-opt-out/

Please let all of your family, friends and fellow workers know too. This will affect everyone currently registered with a GP practice in England – not Scotland, Wales or Northern Ireland – as soon as the beginning of September.

Contact your MP and your union representative and spread the word!

Phil Booth is the coordinator of medConfidential, which is an independent non-partisan organisation campaigning for confidentiality and consent in health and social care, which seeks to ensure that every flow of data into, across and out of the NHS and care system is consensual, safe, and transparent. Founded in January 2013, medConfidential works with patients and medics, service users and care professionals; draws advice from a network of experts in the fields of health informatics, computer security, law/ethics and privacy; and believes there need be no conflict between good research, good ethics and good medical care.

Image: https://www.pexels.com/photo/doctor-pointing-at-tablet-laptop-1282308/. Author: Pexels, licensed under the Creative Commons Attribution-Share Alike 4.0 International license.

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