But the announcement from the Department of Health and Social Care indicates that the NHS App is just one route to us being able to digitally access our health services. Its digital vision relies upon an increasing range of “other patient-facing apps” – privately provided – also having access to our records, medication lists and so forth.
The strategy sets out, for example, how our “appointment bookings, vaccination status, health records and personalised wellness services” could be “made available nationally for strategic partners to integrate with”.
And what of those “strategic partners”? Do they include spy tech firm Palantir, now a preferred supplier for handling NHS data, to whom the government has been trying to grant wider, business-as-usual access to our NHS data, again in the face of stiff opposition from openDemocracy and our colleagues at Foxglove?
Interestingly, earlier this month Palantir also bought a strategic stake in Babylon, a firm that specialises in artificial intelligence and apps for healthcare and already has a range of NHS contracts. Babylon has been the subject of privacy and safety concerns.
Will the law protect us?
NHS Digital reassures us that our sensitive personal data is protected by data protection legislation dating from the EU era. But just last week Downing Street published a taskforce report proposing that those safeguards be replaced by a watered- down version, so that health data could be more readily shared to make way for AI and health app development.
Now today’s strategy says that new laws to enable greater health data sharing will be “secondary legislation” – and thus not subject to proper parliamentary debate.
This is simply not good enough. The issues need serious debate – and a massive public information campaign so we can take part in that debate.
Despite Hancock’s claim that he instigated the GP data grab pause to “to work with the privacy groups”, he doesn’t seem in any rush to do so. His department has so far given no substantive reply to the Foxglove-openDemocracy coalition’s outstanding questions, just “indicators of delay”.
And asked this morning if the government would now write to everyone about the data grab and how people could opt out of it, as campaigners are demanding, Hancock replied: “I’m not against that.” A pretty passive statement from the man who is in charge of making it happen – or not.
But isn’t it all about saving lives?
Today’s strategy leaves all the key questions about the GP data grab – how it will work technically, what the legal safeguards are, how we can know about and exercise meaningful choice, and most of all, who will have access to our data – for another day. Perhaps we’ll find out in the Data Protection Impact Assessment that the government still hasn’t published, despite being legally required to do so.
But the health secretary would rather invite us to imagine a rose-tinted future in which lives are saved, privacy is protected, money is saved, and there are no losers.
Hancock airily invokes NHS hospital trials to justify doing pretty much anything he wants with non-hospital, highly personal GP data. He vaguely tells us that dexamethasone saved lives “because of NHS data”, which is about as meaningful as telling us it saved lives “because of doctors”, or “because of Matt Hancock”.
His junior minister Lord Bethell pursues a similar strategy, claiming that because “analysing patient data on maternity outcomes has improved care for mothers and babies”, it therefore follows that “greater sharing of patient information across the health and care system will undoubtedly go on to drive further improvements in patient safety”.
Well, perhaps. But who exactly is part of the “health and care system”? Big pharma? Spy tech? The US insurance companies already embedded in our NHS? What other benefits might they reap, and will these all necessarily be in the patients’ interests?
The vagueness is deliberate, giving the impression that the planned massive new GP data flows will be used to improve treatments, whilst avoiding saying explicitly it will be used for clinical trials. Because if they said that explicitly, they’d be in hot water – the ethics of trials, and the requirement for meaningful consent, are well established – and, notably, far too rigorous for pharmaceutical companies’ liking.
Brushing these serious issues aside, Hancock claimed to the House of Commons Science and Technology Committee earlier this month, that “the vast majority of people are strongly onside” with the plans to scoop up all their GP data – without citing any evidence to back up that assertion.
Asked about Palantir, he told Today this morning that “the goal here and what I’m determined to do is to have trusted research environments” – systems that protect privacy and ensure meaningful control whilst allowing useful insights. But we already have those kind of systems. The trouble is they are not compulsory, nor sufficiently protected from being watered down, and there’s no promise to make them so.
The real aim seems to be to obfuscate whilst clearing the way for companies (and indeed other parts of government, including the Home Office and Department for Work and Pensions) to drink more freely from the data lake of our health information.
It’s causing enough concern amongst MPs that David Davis, who’s part of the Foxglove-openDemocracy coalition, is holding an adjournment debate on Thursday to discuss the GP data grab.
There are certainly many tough questions that need to be asked. As Cori Crider of Foxglove pointed out, the “whiz-bang data integration” that has started to take place during COVID “didn’t stop the United Kingdom having one of the worst death tolls in the Western world”. Poor people have been the most exposed, and data hasn’t provided any kind of magic bullet to prevent or address that. “This kind of techno solutionism is not necessarily the best way of making an NHS sustainable for the long haul,” the lawyer says.
The big questions are not just about privacy, but about democracy – and in particular, about the ongoing corrupting influence of big tech, big pharma and big business in general, on our health and care systems. And about just why the government finds it so difficult to offer people a real choice between sharing their data purely for care purposes, and sharing it for profit.
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