The Edward Snowden revelations could prove bad for our health, thwarting a vital NHS scheme to gather clinical information
If you thought someone snooping around your emails and listening to your phone calls was bad, imagine them looking at your medical records. The private realm may be ever-shrinking – in an age when we reveal so much of ourselves online and when we know the eavesdroppers of the NSA and GCHQ are never far away – but if there's one thing we'd want to keep behind high walls, it's surely the intimate histories of our mental and physical health.
So there can be little surprise that privacy campaigners are recoiling at the expansion of NHS England's data collection, which from this spring will take in information from the place where most people experience the NHS: their GP's surgery. Until now, the NHS in England kept the stats from hospital visits but not from those day-to-day encounters with your local doctor. As 26.5m leaflets pop through letterboxes, explaining the new "care.data" project, groups such as medConfidential.org are urging patients to opt out in the name of basic privacy. One survey found that up to 40% of GPs plan to keep their own personal records out of the scheme. My first, unreflective instinct would be to stay out too – and others will surely feel the same way. Indeed, the appeal of that stance says much about the times we live in, both online and in the physical world.
For one thing, less than a year after Edward Snowden's revelations of mass surveillance, the notion that our medical records will remain closely guarded, viewed only by those doctors and scientific researchers who need to see them, arouses instant scepticism. Sure, we think. They said the same about our emails. After Snowden, many will assume that if the authorities want to know whether we are HIV-positive or once suffered from depression, they'll be able to find out with just one click. As medConfidential's Phil Booth told the FT: "Everyone agrees medical research is a good thing but, after the NSA scandal, people are getting wise to the dangers of these massive data sets." [paywalled link]
It doesn't even have to be that sinister. It wasn't that long ago that government ministers were apologising from the floor of the House of Commons after Revenue & Customs mislaid two discs containing the names, dates of birth, national insurance numbers and, where relevant, bank details of 25 million people. What, one wonders now, is to stop the geniuses who brought us that disaster messing up again, except this time losing not our tax details but the stories of our lives and bodies?
Campaigners worry too about who might want to take a look at all that info. Won't the big drug companies be desperate to pore over that information, the better to profit from our frailties? And if private health and life insurance companies get access to that data, won't they start charging higher premiums if they know what once took us to see the doctor?
Given all those worries, you can see why some want to opt out. And yet that first, gut instinct might be wrong. It's not just that the vast bulk of the information will be rendered anonymous, with individuals blurred out in all but the most controlled circumstances, or that there are strict rules in place over access to this information. Nor even that there is an explicit declaration that this data will not be shared with insurance or marketing companies – so no prospect of a Strepsils ad popping up on your screen just after you've seen your GP over a sore throat.
Rather, it's the great gain that this information will provide. Small, clinical studies only tell you so much. Sometimes it's mass data you need. It was mass information that disproved the link between MMR and autism, or that spotted the connection between Thalidomide and birth defects, or between smoking and cancer. Ethically you can't conduct trials on pregnant women or children, so you're reliant on knowing what's happening in the population. If you can know that swiftly and at scale, you can act faster and more effectively. As the leaflet popping through the door puts it: "Better information means better care."
The pragmatic truth is that this logic extends even to the private drug companies. Like it or not, it's through pharmaceutical companies that new medicines are developed: they're the ones who fund the trials, turning research into medication. As Nicola Perrin of the Wellcome Trust, which strongly backs care.data, put it to me: "If we want access to the best possible drugs, the drug companies need access to the best possible information."
There is a principle at stake here too. In a subtle piece for the Socialist Health Association, Prof Dave Byrne recalls the traditional method of teaching medical students, in which a senior doctor on a ward-round would urge them to look at and learn from real-life individuals and their treatment: care.data is just a hi-tech version of that process, says Byrne, gathering together doctors' experience of treating patients. Viewed this way, our individual experience of treatment – suitably anonymised – is not our private property, even if it should remain private. Those who treated us have the right to use that experience to benefit others, to help the collective good.
But anonymity is the key. None of these arguments in favour of care.data works unless we can be sure those rules on access hold firm and that the identity of individual patients remains concealed – and not easily hacked as some currently fear. And yet online anonymity remains vexed. All too often it seems we don't have it when we should, whether through data loss or NSA-style state intrusion. At the same time, we have too much anonymity when we shouldn't: witness the social media trolls and abusers, or phoney, astroturf campaigners, able to stay hidden when they would surely shrivel if exposed to the daylight and forced to reveal their true identities.
The larger obstacle confronting this new scheme goes beyond the virtual realm. It is a change that is infecting almost every aspect of our shared lives: loss of trust. So the government can issue guarantees of privacy protection and our first thought is of missing discs, GCHQ eavesdroppers or perhaps hacked phones. Too many institutions have been exposed as having betrayed their unspoken promises, whether it's MPs, the security services, the police, the banks or the BBC.
For many years the NHS stood alone, immune to this trend, doctors topping every index of trust. But thanks to Mid-Staffs and scandals like it, the NHS too has been found wanting. Which is why a good idea like a project to share our broad, unnamed data can face such resistance. We take nothing on trust these days – not even the word of a doctor.