The value of NHS Data19 Jan 2021 22:06
As a society, we are finally acquiring a healthy scepticism about the use and abuse of our personal information. New polling conducted by YouGov for the Institute for Public Policy Research shows that 80% of the public want to see tighter rules applied to how the likes of Facebook and Amazon use their data. Over the weekend, it was revealed that US pharmaceutical companies have already been sold data relating to millions of NHS patients and that Amazon, incredibly, has been given free access to NHS data Hidden away in the secret US-UK trade papers, leaked and revealed by Labour in November, is perhaps the biggest single threat to public data yet seen.
Instead of the encroaching privatisation of publicly held data, we should be looking to create a “digital commons”
The potential threat to the NHS from a post-Brexit US trade deal is clear, and has become a major election talking point. But alongside the well-known dangers of accelerating privatisation and drug price hikes, there are risks to one of the UK’s most prized publicly owned resources. The NHS has one of the planet’s most valuable repositories of data: primary care records that cover sometimes decades of consistent, high-quality, trusted data on 55 million individuals, potentially covering their entire health histories. On top of that, an estimated 23 million care records document episodic treatments when patients receive secondary or specialist care. Accountants Ernst & Young estimate its value at £9.6bn annually.
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For pharmaceutical companies, such comprehensive data is considerably more valuable than any sample. Large, clean, consistent and trusted datasets such as the NHS’s are a goldmine. Already, medical researchers are deriving useful results from machine-learning techniques – for instance, in providing rapid diagnoses of cataracts and other common eye diseases. And with progress in medical research increasingly driven by such techniques, the value of NHS data will only increase over time. It is a glistening prize for major health and pharmaceutical providers – or, indeed, big tech companies looking to move into the field.
That is why, as the leaked documents say, “obtaining commitments on the free flow of data is a top priority” for the US (you can find this on page 22). Free flows of data, including removing barriers to “data localisation”, imply that very sensitive health data could be taken and placed on servers outside of UK domestic law. And as Alan Winters, director of the Trade Policy Observatory at Sussex University has explained, combined with the US insistence that copyright and patent law are strictly enforced under a future trade deal, this could mean a situation where the UK is unable to analyse its health data without paying a royalty to Silicon Valley to use an algorithm.
Leaving the EU on the terms of the current withdrawal agreement – which imply a sharp break with the EU, including its various protections on data transfer – would leave t
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