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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Inside Big Ben: why the world’s most famous clock will soon lose its bong

Every now and then, even the most famous of clocks need a bit of care.

London is soon going to lose one of its most familiar sounds when the world-famous Big Ben falls silent for repairs. The “bonging” chimes that have marked the passing of time for Londoners since 1859 will fall silent for months beginning in 2017 as part of a three-year £29m conservation project.

Of course, “Big Ben” is the nickname of the Great Bell and the bell itself is not in bad shape – even though it does have a huge crack in it.

The bell weighs nearly 14 tonnes and it cracked in 1859 when it was first bonged with a hammer that was way too heavy.

The crack was never repaired. Instead the bell was rotated one eighth of a turn and a lighter (200kg) hammer was installed. The cracked bell has a characteristic sound which we have all grown to love.

Big Ben strikes. UK Parliament.

Instead, it is the Elizabeth Tower (1859) and the clock mechanism (1854), designed by Denison and Airy, that need attention.

Any building or machine needs regular maintenance – we paint our doors and windows when they need it and we repair or replace our cars quite routinely. It is convenient to choose a day when we’re out of the house to paint the doors, or when we don’t need the car to repair the brakes. But a clock just doesn’t stop – especially not a clock as iconic as the Great Clock at the Palace of Westminster.

Repairs to the tower are long overdue. There is corrosion damage to the cast iron roof and to the belfry structure which keeps the bells in place. There is water damage to the masonry and condensation problems will be addressed, too. There are plumbing and electrical works to be done for a lift to be installed in one of the ventilation shafts, toilet facilities and the fitting of low-energy lighting.

Marvel of engineering

The clock mechanism itself is remarkable. In its 162-year history it has only had one major breakdown. In 1976 the speed regulator for the chimes broke and the mechanism sped up to destruction. The resulting damage took months to repair.

The weights that drive the clock are, like the bells and hammers, unimaginably huge. The “drive train” that keeps the pendulum swinging and that turns the hands is driven by a weight of about 100kg. Two other weights that ring the bells are each over a tonne. If any of these weights falls out of control (as in the 1976 incident), they could do a lot of damage.

The pendulum suspension spring is especially critical because it holds up the huge pendulum bob which weighs 321kg. The swinging pendulum releases the “escapement” every two seconds which then turns the hands on the clock’s four faces. If you look very closely, you will see that the minute hand doesn’t move smoothly but it sits still most of the time, only moving on each tick by 1.5cm.

The pendulum swings back and forth 21,600 times a day. That’s nearly 8m times a year, bending the pendulum spring. Like any metal, it has the potential to suffer from fatigue. The pendulum needs to be lifted out of the clock so that the spring can be closely inspected.

The clock derives its remarkable accuracy in part from the temperature compensation which is built into the construction of the pendulum. This was yet another of John Harrison’s genius ideas (you probably know him from longitude fame). He came up with the solution of using metals of differing temperature expansion coefficient so that the pendulum doesn’t change in length as the temperature changes with the seasons.

In the Westminster clock, the pendulum shaft is made of concentric tubes of steel and zinc. A similar construction is described for the clock in Trinity College Cambridge and near perfect temperature compensation can be achieved. But zinc is a ductile metal and the tube deforms with time under the heavy load of the 321kg pendulum bob. This “creeping” will cause the temperature compensation to jam up and become less effective.

So stopping the clock will also be a good opportunity to dismantle the pendulum completely and to check that the zinc tube is sliding freely. This in itself is a few days' work.

What makes it tick

But the truly clever bit of this clock is the escapement. All clocks have one - it’s what makes the clock tick, quite literally. Denison developed his new gravity escapement especially for the Westminster clock. It decouples the driving force of the falling weight from the periodic force that maintains the motion of the pendulum. To this day, the best tower clocks in England use the gravity escapement leading to remarkable accuracy – better even than that of your quartz crystal wrist watch.

In Denison’s gravity escapement, the “tick” is the impact of the “legs” of the escapement colliding with hardened steel seats. Each collision causes microscopic damage which, accumulated over millions of collisions per year, causes wear and tear affecting the accuracy of the clock. It is impossible to inspect the escapement without stopping the clock. Part of the maintenance proposed during this stoppage is a thorough overhaul of the escapement and the other workings of the clock.

The Westminster clock is a remarkable icon for London and for England. For more than 150 years it has reminded us of each hour, tirelessly. That’s what I love about clocks – they seem to carry on without a fuss. But every now and then even the most famous of clocks need a bit of care. After this period of pampering, “Big Ben” ought to be set for another 100 or so years of trouble-free running.

The Conversation

Hugh Hunt is a Reader in Engineering Dynamics and Vibration at the University of Cambridge.

This article was originally published on The Conversation. Read the original article.