NHS plans to mine patient records is a colossal invasion of privacy – and it won’t stop there

No one can be blamed for being unaware that they have until 23 June to opt out of one of the largest invasions of private information in British history. NHS digital is proposing to mine every patient’s medical history held in general practice in England by 1 July. This announcement was quietly issued on 6 April, stating it was at the bequest of the health secretary Matt Hancock.

The justification for this personal data intrusion is to enhance medical research and improve the planning of health services. Sounds logical and commendable until as always you dig into the detail and reflect on what this actually means. For starters, this isn’t some purely altruistic endeavour as there is accompanying guidance on charges for accessing this data included in the proposals.

The level of detail included will, I fear, prove to be too seductive to resist for some. This won’t just be about how many times you’ve visited your GP, but what the reasons for that visit were. We’re talking granular detail that could include the most private parts of your life that no one else knows about. Personal drinking and smoking habits, whether you use drugs, have been a victim of domestic violence, whether you have a mental health problem, sexual health issues and details of criminal offences. As well as the more obvious health issues like diabetes, heart problems or cancer.

That’s the kind of information that insurance and pharmaceutical companies, for example, would kill for. It has a monetary value as there is only one place where this information is held. In effect, the NHS is the monopoly information provider. Medical bodies have been consulted and are lukewarm about the idea, stressing the legal obligation that practitioners have to comply. Their lack of support is because they know how unreliable the opt-out option is, with 86 per cent of requested opt outs failing in March this year.

Any threat to privacy and confidentiality is clearly significant for the 55 million people already registered with a general practice. Some of these people already have a fragile relationship with healthcare and more will not be impressed with their privacy being invaded by companies willing to pay to get hold of this information.

As Julian Tudor Hart, a GP working in the Welsh valleys in the 1970s, noted in The Lancet, it is those with the greatest health needs that get the least in the way of health services. Gathering and flogging individuals’ private lives is hardly a way of enticing those who are already very wary of engaging in health care. Tudor Hart’s inverse care law still applies today. Those with the resources to fund private health care will largely be unaffected by this new scheme. Whereas those from the most disadvantaged backgrounds will, either by having little control over their personal and private health status or worse, those people who already don’t trust health services, now have an additional reason to be wary. That’s despite them having the greatest health needs, for example travellers, immigrants and rough sleepers.

Make no mistake, these guidelines are so vague that there is sufficient latitude to go beyond the stated aims of improving health care planning and provide valuable information to commercial players. You couldn’t design a more effective way of reaching into people’s personal lives while they are completely unaware of it happening, despite the cost they will bear as a consequence. This is the most audacious breach of personal information with few safeguards in place to protect individuals and executed in the sneakiest way possible. Sadly few will notice it happen until it’s too late.

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