For Sale: NHS Records. Condition, morally dubious

Should we be worried about the monetization of access to NHS records?

It’s finally upon us. In what many will argue is a victory for science, but a blow to privacy, this September will see the launch of Clinical Practice Research Datalink (CPRD), the controversial database that will make NHS records available for research – at a price.

Scientifically, there’s a lot to celebrate. The CPRD will offer researchers in the health sciences unheard of access to the life records of 52 million English NHS users and, in time, will be connected to other databases, such as those that deal with genetics and mental health. What this will provide is a resource for huge scale and easily longitudinal studies that researchers could previously only dream of. To understand the benefits one only need consider the important findings of previous studies that have used NHS records, notable examples of which include the revealing of a link between power lines and leukaemia, dismissing the proposed link between autism and the MMR vaccine, and uncovering disastrous effects of overdoses of thalidomide.

David Cameron was right to argue that it’s "simply a waste" for the NHS data not to be used “to make new medical breakthroughs". Yet the current setup only makes sense if the CPRD's main interest is monetary, rather than scientific, profit. Note, for instance, the emphasis in the first paragraph of the Department of Health website about the project's launch.

In March 2011, The Government launched its ‘Plan for Growth’ which details steps needed to enable the British economy to become more internationally competitive. As part of this initiative The Government pledged to build a consensus on using e-health record data to create a unique position for the UK in health research.

Though scientific rationales are mentioned later it’s quite clear that the economic benefits are the first on their mind. Taken in this light, perhaps the CPRD should be seen as nothing new. From education, to transport to policing, the government is surveying the welfare state with sparkly pound signs in their eyes. Yet there’s a subtle difference between such asset striping and what has happened with the CPRD, in which that hungry look has fallen on the population itself. There's new and radical idea here - the possibility that one of England’s most lucrative asset is us. This isn’t mere speculation, the life sciences industry is currently worth £50bn a year and the CPRD, with its unparalleled mass of data, is an irresistible honey pot that will entice global pharma back to our shores.

Yet nothing ever comes for free, and the price we are set to pay is an infringement, however slight, on our privacy and rights. Though there is the opportunity to opt out of system, despite huge protest, MPs intend to rewrite the NHS constitution to presume patient consent. There have also been grave concerns over anonymity. Though no names will be included with records, post codes and age profiles will remain attached, meaning that in some cases publicly known information will make it possible to trace anonymous records to individuals. As a report from the Royal Society in June stated:

It had been assumed in the past that the privacy of data subjects could be protected by processes of anonymisation such as the removal of names and precise addresses of data subjects. However, a substantial body of work in computer science has now demonstrated that the security of personal records in databases cannot be guaranteed through anonymisation procedures where identities are actively sought.

And this isn’t even taking human error into consideration. Consider the furor in June last year when a laptop with 8.6 million medical records went missing. Centralisation projects like the CPRD only make incidences like this more common and problematic.

Perhaps it should be taken as a sign of the times that an egalitarianism institution, which arose from post-war ashes on the belief that every individual should be valued and given the right to health, is now becoming one in which those same individuals are being increasingly valued as profitable data points. It’s the type of ideology and practice we are more used to in the likes of Social Media, but that are rapidly permeating society.

By practice, I am, of course, talking about data-mining. Since the word popped up as an innocuous 90s buzzword, the subtle statistical craft has become a dominant, and highly lucrative, marketing force. Simplistically, it’s the process of running algorithms on huge amounts of data to reveal powerful associations from seemly irrelevant information and grant the investigators immense inferential power. Worst of all, data-mining is insatiable. As people have finite pockets, there is a threshold at which a population can’t consume any more and data-mining leads to an arms race in which companies are pressured to paw through our psyches for more and more invasive information in a scrabble to regain their edge. Admittedly, as faceless, nameless, number crunching, data-mining doesn’t infringe upon personal privacy, but it could be argued that it is an assault on our personal integrity.

I’m therefore always surprised at how ambivalent, even welcoming, people tend to be to the idea. ‘Surely advertising tailored to me is a good thing’, the reasoning goes. Yet this argument is based on a conception of people as completely rational agents. I speak as a Psychology graduate when I say, trust me, we’re really not. Massive amounts of private scientific research is devoted to unpicking consumer behaviour and mapping the subconscious, emotional and impulsive driving factors behind our buying habits. What's more, the influence is so subtle they individuals aren’t even conscious of its impact upon their actions. Yet we should never forget that knowledge is power. What data-mining sells is access to the inner workings of a population, and what is bought is the ability to manipulate behaviour. If you don’t believe this, then ask yourself why so many big corporations are flinging their best minds and resources after the practice.

So should we be worried about the data-mining that the CPRD will facilitate? Admittedly, it isn’t dealing in anything as candidly invasive as kidneys out of a piss reeking back alleys, but one doesn’t need much imagination to see that were CPRD to give too much access to the likes of drug companies and other private industries this would be a very troubling state of affairs. Of course, there are limits to the use of the database, under the current framework data can only be used for medical research and all projects must publicly publish their results. The Medicines and Healthcare Products Regulatory Agency, the governmental agency running the scheme, will also charge private companies double the academic rate. Yet the pockets of drug companies are very deep and giving them any kind of access opens up opportunities for manoeuvre. Not to mention that once such resources become monetised it’s an easy step to start loosening the conditions under which data can be used.

Even the information commissioning office itself has suggested applications such as the creation of an encryption key to be shared by the NHS and supermarkets, which would allow for the diabetic status of individuals to be correlated with supermarket purchases. Big Brother issues aside, the idea that supermarkets, or any business could have this sort of access is terrifying. As any marketer worth their salt knows, two of the most effective sellers are fear and sex, both of which are heavily rooted in health.

Despite such arguments, it’s important not to lose track of the fact that in principle the CPRD is an excellent humanitarian project. Though there are significant dangers involved, standing in the way of scientific progress is never the responsible answer to controversy. As with nearly all modern technology, morality lies in the application and ideology and this is where we should execute caution, especially as the economic motivation of the government is far from reassuring. Vigilance is needed.

David Cameron speaking on NHS reforms (Image: Getty)

Emma Geen is a freelance writer. She tweets @EmmaCGeen and blogs at www.emmageen.com

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The Brexit Beartraps, #2: Could dropping out of the open skies agreement cancel your holiday?

Flying to Europe is about to get a lot more difficult.

So what is it this time, eh? Brexit is going to wipe out every banana planet on the entire planet? Brexit will get the Last Night of the Proms cancelled? Brexit will bring about World War Three?

To be honest, I think we’re pretty well covered already on that last score, but no, this week it’s nothing so terrifying. It’s just that Brexit might get your holiday cancelled.

What are you blithering about now?

Well, only if you want to holiday in Europe, I suppose. If you’re going to Blackpool you’ll be fine. Or Pakistan, according to some people...

You’re making this up.

I’m honestly not, though we can’t entirely rule out the possibility somebody is. Last month Michael O’Leary, the Ryanair boss who attracts headlines the way certain other things attract flies, warned that, “There is a real prospect... that there are going to be no flights between the UK and Europe for a period of weeks, months beyond March 2019... We will be cancelling people’s holidays for summer of 2019.”

He’s just trying to block Brexit, the bloody saboteur.

Well, yes, he’s been quite explicit about that, and says we should just ignore the referendum result. Honestly, he’s so Remainiac he makes me look like Dan Hannan.

But he’s not wrong that there are issues: please fasten your seatbelt, and brace yourself for some turbulence.

Not so long ago, aviation was a very national sort of a business: many of the big airports were owned by nation states, and the airline industry was dominated by the state-backed national flag carriers (British Airways, Air France and so on). Since governments set airline regulations too, that meant those airlines were given all sorts of competitive advantages in their own country, and pretty much everyone faced barriers to entry in others. 

The EU changed all that. Since 1994, the European Single Aviation Market (ESAM) has allowed free movement of people and cargo; established common rules over safety, security, the environment and so on; and ensured fair competition between European airlines. It also means that an AOC – an Air Operator Certificate, the bit of paper an airline needs to fly – from any European country would be enough to operate in all of them. 

Do we really need all these acronyms?

No, alas, we need more of them. There’s also ECAA, the European Common Aviation Area – that’s the area ESAM covers; basically, ESAM is the aviation bit of the single market, and ECAA the aviation bit of the European Economic Area, or EEA. Then there’s ESAA, the European Aviation Safety Agency, which regulates, well, you can probably guess what it regulates to be honest.

All this may sound a bit dry-

It is.

-it is a bit dry, yes. But it’s also the thing that made it much easier to travel around Europe. It made the European aviation industry much more competitive, which is where the whole cheap flights thing came from.

In a speech last December, Andrew Haines, the boss of Britain’s Civil Aviation Authority said that, since 2000, the number of destinations served from UK airports has doubled; since 1993, fares have dropped by a third. Which is brilliant.

Brexit, though, means we’re probably going to have to pull out of these arrangements.

Stop talking Britain down.

Don’t tell me, tell Brexit secretary David Davis. To monitor and enforce all these international agreements, you need an international court system. That’s the European Court of Justice, which ministers have repeatedly made clear that we’re leaving.

So: last March, when Davis was asked by a select committee whether the open skies system would persist, he replied: “One would presume that would not apply to us” – although he promised he’d fight for a successor, which is very reassuring. 

We can always holiday elsewhere. 

Perhaps you can – O’Leary also claimed (I’m still not making this up) that a senior Brexit minister had told him that lost European airline traffic could be made up for through a bilateral agreement with Pakistan. Which seems a bit optimistic to me, but what do I know.

Intercontinental flights are still likely to be more difficult, though. Since 2007, flights between Europe and the US have operated under a separate open skies agreement, and leaving the EU means we’re we’re about to fall out of that, too.  

Surely we’ll just revert to whatever rules there were before.

Apparently not. Airlines for America – a trade body for... well, you can probably guess that, too – has pointed out that, if we do, there are no historic rules to fall back on: there’s no aviation equivalent of the WTO.

The claim that flights are going to just stop is definitely a worst case scenario: in practice, we can probably negotiate a bunch of new agreements. But we’re already negotiating a lot of other things, and we’re on a deadline, so we’re tight for time.

In fact, we’re really tight for time. Airlines for America has also argued that – because so many tickets are sold a year or more in advance – airlines really need a new deal in place by March 2018, if they’re to have faith they can keep flying. So it’s asking for aviation to be prioritised in negotiations.

The only problem is, we can’t negotiate anything else until the EU decides we’ve made enough progress on the divorce bill and the rights of EU nationals. And the clock’s ticking.

This is just remoaning. Brexit will set us free.

A little bit, maybe. CAA’s Haines has also said he believes “talk of significant retrenchment is very much over-stated, and Brexit offers potential opportunities in other areas”. Falling out of Europe means falling out of European ownership rules, so itcould bring foreign capital into the UK aviation industry (assuming anyone still wants to invest, of course). It would also mean more flexibility on “slot rules”, by which airports have to hand out landing times, and which are I gather a source of some contention at the moment.

But Haines also pointed out that the UK has been one of the most influential contributors to European aviation regulations: leaving the European system will mean we lose that influence. And let’s not forget that it was European law that gave passengers the right to redress when things go wrong: if you’ve ever had a refund after long delays, you’ve got the EU to thank.

So: the planes may not stop flying. But the UK will have less influence over the future of aviation; passengers might have fewer consumer rights; and while it’s not clear that Brexit will mean vastly fewer flights, it’s hard to see how it will mean more, so between that and the slide in sterling, prices are likely to rise, too.

It’s not that Brexit is inevitably going to mean disaster. It’s just that it’ll take a lot of effort for very little obvious reward. Which is becoming something of a theme.

Still, we’ll be free of those bureaucrats at the ECJ, won’t be?

This’ll be a great comfort when we’re all holidaying in Grimsby.

Jonn Elledge edits the New Statesman's sister site CityMetric, and writes for the NS about subjects including politics, history and Brexit. You can find him on Twitter or Facebook.