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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Unite stewards urge members to back Owen Smith

In a letter to Unite members, the officials have called for a vote for the longshot candidate.

29 Unite officials have broken ranks and thrown their weight behind Owen Smith’s longshot bid for the Labour leadership in an open letter to their members.

The officials serve as stewards, conveners and negotiators in Britain’s aerospace and shipbuilding industries, and are believed in part to be driven by Jeremy Corbyn’s longstanding opposition to the nuclear deterrent and defence spending more generally.

In the letter to Unite members, who are believed to have been signed up in large numbers to vote in the Labour leadership race, the stewards highlight Smith’s support for extra funding in the NHS and his vision for an industrial strategy.

Corbyn was endorsed by Unite, Labour's largest affliated union and the largest trades union in the country, following votes by Unite's ruling executive committee and policy conference. 

Although few expect the intervention to have a decisive role in the Labour leadership, regarded as a formality for Corbyn, the opposition of Unite workers in these industries may prove significant in Len McCluskey’s bid to be re-elected as general secretary of Unite.

 

The full letter is below:

Britain needs a Labour Government to defend jobs, industry and skills and to promote strong trade unions. As convenors and shop stewards in the manufacturing, defence, aerospace and energy sectors we believe that Owen Smith is the best candidate to lead the Labour Party in opposition and in government.

Owen has made clear his support for the industries we work in. He has spelt out his vision for an industrial strategy which supports great British businesses: investing in infrastructure, research and development, skills and training. He has set out ways to back British industry with new procurement rules to protect jobs and contracts from being outsourced to the lowest bidder. He has demanded a seat at the table during the Brexit negotiations to defend trade union and workers’ rights. Defending manufacturing jobs threatened by Brexit must be at the forefront of the negotiations. He has called for the final deal to be put to the British people via a second referendum or at a general election.

But Owen has also talked about the issues which affect our families and our communities. Investing £60 billion extra over 5 years in the NHS funded through new taxes on the wealthiest. Building 300,000 new homes a year over 5 years, half of which should be social housing. Investing in Sure Start schemes by scrapping the charitable status of private schools. That’s why we are backing Owen.

The Labour Party is at a crossroads. We cannot ignore reality – we need to be radical but we also need to be credible – capable of winning the support of the British people. We need an effective Opposition and we need a Labour Government to put policies into practice that will defend our members’ and their families’ interests. That’s why we are backing Owen.

Steve Hibbert, Convenor Rolls Royce, Derby
Howard Turner, Senior Steward, Walter Frank & Sons Limited
Danny Coleman, Branch Secretary, GE Aviation, Wales
Karl Daly, Deputy Convenor, Rolls Royce, Derby
Nigel Stott, Convenor, BASSA, British Airways
John Brough, Works Convenor, Rolls Royce, Barnoldswick
John Bennett, Site Convenor, Babcock Marine, Devonport, Plymouth
Kevin Langford, Mechanical Convenor, Babcock, Devonport, Plymouth
John McAllister, Convenor, Vector Aerospace Helicopter Services
Garry Andrews, Works Convenor, Rolls Royce, Sunderland
Steve Froggatt, Deputy Convenor, Rolls Royce, Derby
Jim McGivern, Convenor, Rolls Royce, Derby
Alan Bird, Chairman & Senior Rep, Rolls Royce, Derby
Raymond Duguid, Convenor, Babcock, Rosyth
Steve Duke, Senior Staff Rep, Rolls Royce, Barnoldswick
Paul Welsh, Works Convenor, Brush Electrical Machines, Loughborough
Bob Holmes, Manual Convenor, BAE Systems, Warton, Lancs
Simon Hemmings, Staff Convenor, Rolls Royce, Derby
Mick Forbes, Works Convenor, GKN, Birmingham
Ian Bestwick, Chief Negotiator, Rolls Royce Submarines, Derby
Mark Barron, Senior Staff Rep, Pallion, Sunderland
Ian Hodgkison, Chief Negotiator, PCO, Rolls Royce
Joe O’Gorman, Convenor, BAE Systems, Maritime Services, Portsmouth
Azza Samms, Manual Workers Convenor, BAE Systems Submarines, Barrow
Dave Thompson, Staff Convenor, BAE Systems Submarines, Barrow
Tim Griffiths, Convenor, BAE Systems Submarines, Barrow
Paul Blake, Convenor, Princess Yachts, Plymouth
Steve Jones, Convenor, Rolls Royce, Bristol
Colin Gosling, Senior Rep, Siemens Traffic Solutions, Poole

Stephen Bush is special correspondent at the New Statesman. He usually writes about politics.