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Why BigData is running roughshod over the NHS - and what to do about it

The NHS is being treated as both a 'cash cow' and a 'data cow', a string of recent scandals suggest. And now there's another privacy-bashing tech bonanza on the way, as ID cards rise from the ashes of Brexit policy.

Image: Flickr/Jeremy Keith, some rights reserved.

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It’s no secret. We all know we pay for the NHS through our taxes. But increasingly we’re also paying for health and care services with the invisible currency of our most sensitive personal data; our medical records. 

As data companies insinuate themselves into every aspect of our private lives, in the global Information Gold Rush, we must ensure the founding principle of the NHS – healthcare for all, without discrimination, free at the point of delivery – does not fall prey to the curse of free services: “If you ain’t paying, you are the product.”

Since long before the care.data controversy, patients have been paying with their privacy, and it’s almost always the companies that define the terms of the deal.

In a data-driven world, corporations run rings around the analogue administrators of the NHS. They siphon off resources and when it goes wrong simply walk away from their responsibilities – as we were reminded this week when the NAO slammed the disastrous mess that a part-privatised company made of NHS letters.

How can Google DeepMind continue copying the data of 1.6 million patients from the Royal Free Hospital, despite having no lawful basis to do so? DeepMind paid negotiators to go to the meeting; the NHS sent doctors.

How can GP IT provider TPP get away with deciding that it knew better than GPs who should have access to GP records – and get away with refusing to implement adequate security measures, even when asked? And then, rather than spending engineers’ time fixing the problem, choosing instead to pay its lawyers, strenuously denying to all who would listen that it had done anything wrong?

Because – as we’ve also seen in the fallout from the Grenfell Tower disaster – commercial interests are allowed to subvert the public good, whilst politicians and senior civil servants fail to reign in those interests, putting deregulation above people’s rights to safety, privacy, and due care.

Whitehall and Westminster seem locked into a failed model of ‘cutting red tape’ to ‘liberate’ commercial entities to exploit us as they see fit, despite the best efforts of clinicians and public-spirited technical staff. In the world of NHS IT, we’ve seen a long line of policy decisions, ignored warnings, inexcusably delayed action and bodged responses, such as when the WannaCry ransomware hit the NHS.

Meanwhile, the announcement last week that ID cards are effectively back on the table as Brexit Britain draws closer, offers the possibility of a massive bonanza for whoever gets the contracts – and a massive challenge to the fundamentals of what we believe as a country.

Having already introduced measures that try to make NHS staff hassle brown people for documentation, the NHS now faces a three-way stand-off – a ‘Brexit Triangle’. In the simplest terms: does the Department of Health now direct NHS staff to hassle people with ‘foreign accents’, or to hassle everyone, or do we simply give in and issue everyone with ID cards?

Do we want more cases like Dena Bryant – a deaf British woman who struggles to communicate verbally, who turned up to A&E with an injured arm only to be quizzed about her nationality after staff didn’t think she looked or sounded English enough?

It doesn’t have to be this way, of course. The other option, the choice we first made 69 years ago today, when – having survived the horrors and deprivations of WWII, and when people’s now-defunct ID card numbers were used to generate the very first NHS numbers – we as one nation chose to all contribute to the provision of universal healthcare, free at the point of use, without discrimination.

We heeded well the words of NHS founder Nye Bevan, who said: “How do we distinguish a visitor from anybody else? Are British citizens to carry means of identification everywhere to prove that they are not visitors? For if the sheep are to be separated from the goats both must be classified. What began as an attempt to keep the Health Service for ourselves would end by being a nuisance to everybody.”

So what can you do to break the stand-off? While forces far bigger and more complicated than anyone seems to have planned for steamroller on?

It starts with something quite straightforward: inform yourself, so you can inform others. Get the facts; for, armed with facts, every patient can speak with the authority of their own lived experience of the NHS.

If you have a login for your GP practice’s website, go and look at the letters that have been scanned into your record, and count the logos. (If you don’t already have a login for online access, here’s how to get one.) Then, as your NHS changes over the next few years, do you see more commercial logos or fewer?

While you’re at it, you may also want to check who’s accessed your GP record.

And while everyone’s been distracted by Brexit, the latest reorganisation of the NHS – the “Sustainability and Transformation Plans” – is descending into a divide-and-conquer carve-up.

With a democratic deficit in the NHS that does Theresa May proud, there is very little scrutiny of the process by which decisions are made locally around which services will be cut – the amounts of cuts having been decided centrally, with minimal regard for effects on services. (Meanwhile, DH and NHS England still want to copy all your medical records into a data lake, to micromanage hospitals on a daily basis…) How would your experience of NHS care have been affected, had those cuts already taken place?

Since its inception, reorganisation of the NHS has been an ongoing bureaucratic activity – with the expectation that the public and patients will continue to be passive observers. So, what if the public’s interest were to become an active ally to the Hippocratic Oath: do no harm? As STPs move forwards, whether you wish to be a passive observer of the NHS or not – based on your lived experience and that of your loved ones – is a decision only you can make, and talk about with others.

If you don’t think your experience matters enough to speak up, who do you believe will speak up for you?

 

About the author

Phil Booth co-ordinates medConfidential - campaigning for medical data privacy. For more on how the changes will affect your medical records, visit medConfidential’s ongoing ‘masterclass’ blog series. 


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