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 rise of the green mayor – Sadiq Khan and the politics of clean energy

At an event at Tate Modern, Sadiq Khan pledged to clean up London's act.

On Thursday night, deep in the bowls of Tate Modern’s turbine hall, London Mayor Sadiq Khan renewed his promise to make the capital a world leader in clean energy and air. Yet his focus was as much on people as power plants – in particular, the need for local authorities to lead where central governments will not.

Khan was there to introduce the screening of a new documentary, From the Ashes, about the demise of the American coal industry. As he noted, Britain continues to battle against the legacy of fossil fuels: “In London today we burn very little coal but we are facing new air pollution challenges brought about for different reasons." 

At a time when the world's leaders are struggling to keep international agreements on climate change afloat, what can mayors do? Khan has pledged to buy only hybrid and zero-emissions buses from next year, and is working towards London becoming a zero carbon city.

Khan has, of course, also gained heroic status for being a bête noire of climate-change-denier-in-chief Donald Trump. On the US president's withdrawal from the Paris Agreement, Khan quipped: “If only he had withdrawn from Twitter.” He had more favourable things to say about the former mayor of New York and climate change activist Michael Bloomberg, who Khan said hailed from “the second greatest city in the world.”

Yet behind his humour was a serious point. Local authorities are having to pick up where both countries' central governments are leaving a void – in improving our air and supporting renewable technology and jobs. Most concerning of all, perhaps, is the way that interest groups representing business are slashing away at the regulations which protect public health, and claiming it as a virtue.

In the UK, documents leaked to Greenpeace’s energy desk show that a government-backed initiative considered proposals for reducing EU rules on fire-safety on the very day of the Grenfell Tower fire. The director of this Red Tape Initiative, Nick Tyrone, told the Guardian that these proposals were rejected. Yet government attempts to water down other EU regulations, such as the energy efficiency directive, still stand.

In America, this blame-game is even more highly charged. Republicans have sworn to replace what they describe as Obama’s “war on coal” with a war on regulation. “I am taking historic steps to lift the restrictions on American energy, to reverse government intrusion, and to cancel job-killing regulations,” Trump announced in March. While he has vowed “to promote clean air and clear water,” he has almost simultaneously signed an order to unravel the Clean Water Rule.

This rhetoric is hurting the very people it claims to protect: miners. From the Ashes shows the many ways that the industry harms wider public health, from water contamination, to air pollution. It also makes a strong case that the American coal industry is in terminal decline, regardless of possibile interventions from government or carbon capture.

Charities like Bloomberg can only do so much to pick up the pieces. The foundation, which helped fund the film, now not only helps support job training programs in coal communities after the Trump administration pulled their funding, but in recent weeks it also promised $15m to UN efforts to tackle climate change – again to help cover Trump's withdrawal from Paris Agreement. “I'm a bit worried about how many cards we're going to have to keep adding to the end of the film”, joked Antha Williams, a Bloomberg representative at the screening, with gallows humour.

Hope also lies with local governments and mayors. The publication of the mayor’s own environment strategy is coming “soon”. Speaking in panel discussion after the film, his deputy mayor for environment and energy, Shirley Rodrigues, described the move to a cleaner future as "an inevitable transition".

Confronting the troubled legacies of our fossil fuel past will not be easy. "We have our own experiences here of our coal mining communities being devastated by the closure of their mines," said Khan. But clean air begins with clean politics; maintaining old ways at the price of health is not one any government must pay. 

'From The Ashes' will premiere on National Geograhpic in the United Kingdom at 9pm on Tuesday, June 27th.

India Bourke is an environment writer and editorial assistant at the New Statesman.

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