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Patient data carelessness driving drug use underground

Releasing patients' medical data to police, even when 'pseudonymised', would have massive implications for public health. 

Matt Crompton
24 April 2014

Back in the 90s, when I became sexually active, I was pretty quickly advised by friends to make use of free sexual health services to mitigate against the potential harms of sexually transmitted diseases. This came with a stark warning: do not use your real name, or records will exist that could cause problems. The risk most often cited was that insurance companies and banks could demand medical records from me that would prove that I was gay, and so either cancel existing policies or charge more simply on the basis of sexuality. In other words, being honest about sexuality was a no-no, and I couldn’t afford the risk involved in combining honesty about my sexual activity with honesty about my identity.

HCCH Medical Records/Wikimedia/Jackhsiao. Creative commons

Of course they never checked my identity, because quite rightly their priority lay in improving public health. The anonymity offered by these services through their tacit acceptance of false personal information clearly resulted from knowledge that, without absolute confidentiality, people in high-risk groups would simply stay away. If they did that, the services would have failed in their mission to reduce harm.

Roll forward 20 years and that stealth seems a distant memory. With protection against discrimination in place, the NHS has enjoyed a great degree of public trust, at least amongst the LGBT community. Trust that inevitably boosts their ability to assess developments in diseases, public behaviour and treatment. 

Now, with the controversy surrounding the release of patient data, it seems the importance and value of confidentiality is all but forgotten in the rush to give drug companies and the police the access they desire. We are told our privacy is taken care of: we can opt out of the central database, and the data in it will be “pseudonymised” – a process by which directly identifiable personal information is removed. In fact, as has been widely reported by newspapers, this turns out not to be entirely true: the police will have access to data by named individuals without a warrant, undermining perhaps the most vital confidential relationship in society. There may be positive aims mixed in with this mess – a rich data set which could lead to improved understanding of disease, better treatments and the like – but trust has been torpedoed. Think about it: GPs are, generally, people who the public feel they can trust. 

Effective healthcare depends on the ability to be honest without fear of repercussions, and this has to include illicit drug use. Government policy on drug use is ostensibly predicated on harm reduction, yet the legal status of most recreational drugs puts vast numbers of people on the wrong side of the law: 2.7 million, according to the 2012-2013 Crime Survey for England and Wales, or 8.2% of the adult population. For young people this figure is over 16%. 

Drug use potentially leads to harm that can only be exacerbated if people feel they cannot trust the NHS enough to discuss their use and the attendant risks, and the most vulnerable will pay the highest price. If you’re admitted to hospital after overindulging, for example, are you more or less likely to admit everything you’ve done if you know the police have the right to interrogate your medical records without a warrant? The answer is as obvious as the need for doctors to know why you’re as ill as you are. So once again, government policy will only serve to increase the risks involved in drug use, while they keep trotting out the tired and ever less credible line that current drug laws reduce harm.

Now the plans have been put back six months while privacy concerns are addressed. This is a golden opportunity for politicians to restore the privacy and trust inherent in the doctor-patient relationship, but it looks likely to be wasted and the time used instead to allow the issue to drift out of public consciousness.

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