Is he listening? Jeremy Hunt on his way to the Conservative Black and White Ball, February 2014. (Photo: Getty)
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Care.data is really about making Britain the go-to country for pharmaceutical development

Dr Phil Whitaker’s Health Matters column.

I wonder whether Jeremy Hunt, the Secretary of State for Health, is secretly pleased about the recent furore over care.data. The plan to merge GP, hospital and social care records into one database has provoked enormous public concern over potential breaches of confidentiality – and fears that the National Health Service would subsequently sell data to commercial insurance companies have flushed out embarrassing admissions that it has done this sort of thing in the past.

So Hunt is getting to play Mr Fixit, announcing draconian penalties for anyone attempting to identify individuals from anonymised data and promising legislation to prevent the sale of NHS information for “commercial insurance or other purely commercial purposes”.

The row over confidentiality and commercialism has distracted attention from what the government hopes this database will do. The standard rubric passes without comment: it will be a unique research resource, giving us an unprecedented opportunity to investigate links between lifestyle and disease and to detect unsuspected side effects of drugs or other medical interventions.

On the face of it, this argument seems to be uncontroversial. Yet the work that care.data will supposedly enable has been going on for years. The General Practice Research Database (GPRD) has been around since the early 1990s; it is a huge repository of primary-care patient information that has spawned hundreds of studies into lifestyle, diseases and treatments. Participating practices supply anonymised data voluntarily, with 20 million patients represented.

Groups such as the Haematological Malignancy Research Network (HMRN) have long linked to hospital and GP records in their studies of leukaemia and lymphoma. Patients’ NHS numbers enable researchers to track the lifelong health of each cancer sufferer in their study. Analysis of past GP records is uncovering important health antecedents that may help to explain the development of these diseases.

If this kind of research is happening already, why the sudden need for care.data? On coming to power, the coalition government commissioned a wide-ranging review of how to rebalance the UK economy and make it more internationally competitive. The results were published in March 2011 in The Plan for Growth, described as an “urgent” strategy to turn our economic fortunes around. In the report, health-care research was identified as a strong candidate for growth and inward investment and there was a new appreciation within government of the unique opportunities offered by the NHS.

Nowhere else in the world are the details of an entire nation’s health recorded so comprehensively by a single service – and one that is at the forefront of computerising its information. The existing NHS data is attractive to all researchers but it could be most lucrative for those in the pharmaceutical industry. The NHS’s already well-developed data infrastructure makes it an enticing arena in which companies can conduct clinical trials of new drugs. Forget selling information to commercial insurance companies – care.data is about making England the go-to country for pharmaceutical research and development.

So, in order to maximise the attractiveness, the entire population needs to be on offer. In March 2012, the voluntary GPRD was subsumed into the Clinical Practice Research Datalink (CPRD), a new body tasked with exploiting the NHS’s potential to the full, but voluntary enrolment was never going to deliver the whole-country data set required. Cue the automatic uploading of GP records to care.data.

The haste with which all of this is happening has major downsides. The HMRN is successful because the researchers, pathologists and clinicians in the network are all speaking the same data language. But throughout the wider NHS, information is still being recorded with varying degrees of rigour. The Health Informatics Unit at the Royal College of Physicians has been driving forward the adoption of a universal data language across the NHS but this is still years away. There is concern that the advent of care.data will overburden NHS providers, preoccupying them with trying to extract data for which they don’t have the systems or the right language at present.

Another rationale for care.data is its ability to audit care and pick up poor performance. Again, this kind of work has been going on for years and the data is still criticised as being of poor quality. My practice repeatedly flags up as an outlier: while we appear brilliant at preventing heart attacks, we seem to be appalling at treating children. In reality, our population is heavily skewed to young families, as a result of which we have many paediatric admissions but fewer older patients to develop heart disease. The algorithms that are supposed to adjust our data to match our demographics simply don’t work. More development will be needed before meaningful audits and performance checks can be conducted.

The publicly trumpeted goals of care.data are laudable and all should be achievable, given time. Hunt should be frank about the economic imperative behind the urgency to establish the database and should engage in a sensible discussion about what might be compromised by undue haste. 

 

This article first appeared in the 12 March 2014 issue of the New Statesman, 4 years of austerity

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Erdogan’s purge was too big and too organised to be a mere reaction to the failed coup

There is a specific word for the melancholy of Istanbul. The city is suffering a mighty bout of something like hüzün at the moment. 

Even at the worst of times Istanbul is a beautiful city, and the Bosphorus is a remarkable stretch of sea. Turks get very irritated if you call it a river. They are right. The Bosphorus has a life and energy that a river could never equal. Spend five minutes watching the Bosphorus and you can understand why Orhan Pamuk, Turkey’s Nobel laureate for literature, became fixated by it as he grew up, tracking the movements of the ocean-going vessels, the warships and the freighters as they steamed between Asia and Europe.

I went to an Ottoman palace on the Asian side of the Bosphorus, waiting to interview the former prime minister Ahmet Davu­toglu. He was pushed out of office two months ago by President Recep Tayyip Erdogan when he appeared to be too wedded to the clauses in the Turkish constitution which say that the prime minister is the head of government and the president is a ceremonial head of state. Erdogan was happy with that when he was prime minister. But now he’s president, he wants to change the constitution. If Erdogan can win the vote in parliament he will, in effect, be rubber-stamping the reality he has created since he became president. In the days since the attempted coup, no one has had any doubt about who is the power in the land.

 

City of melancholy

The view from the Ottoman palace was magnificent. Beneath a luscious, pine-shaded garden an oil tanker plied its way towards the Black Sea. Small ferries dodged across the sea lanes. It was not, I hasten to add, Davutoglu’s private residence. It had just been borrowed, for the backdrop. But it reminded a Turkish friend of something she had heard once from the AKP, Erdogan’s ruling party: that they would not rest until they were living in the apartments with balconies and gardens overlooking the Bosphorus that had always been the preserve of the secular elite they wanted to replace.

Pamuk also writes about hüzün, the melancholy that afflicts the citizens of Istanbul. It comes, he says, from the city’s history and its decline, the foghorns on the Bosphorus, from tumbledown walls that have been ruins since the fall of the Byzantine empire, unemployed men in tea houses, covered women waiting for buses that never come, pelting rain and dark evenings: the city’s whole fabric and all the lives within it. “My starting point,” Pamuk wrote, “was the emotion that a child might feel while looking through a steamy window.”

Istanbul is suffering a mighty bout of something like hüzün at the moment. In Pamuk’s work the citizens of Istanbul take a perverse pride in hüzün. No one in Istanbul, or elsewhere in Turkey, can draw comfort from what is happening now. Erdogan’s opponents wonder what kind of future they can have in his Turkey. I think I sensed it, too, in the triumphalist crowds of Erdogan supporters that have been gathering day after day since the coup was defeated.

 

Down with the generals

Erdogan’s opponents are not downcast because the coup failed; a big reason why it did was that it had no public support. Turks know way too much about the authoritarian ways of military rule to want it back. The melancholy is because Erdogan is using the coup to entrench himself even more deeply in power. The purge looks too far-reaching, too organised and too big to have been a quick reaction to the attempt on his power. Instead it seems to be a plan that was waiting to be used.

Turkey is a deeply unhappy country. It is hard to imagine now, but when the Arab uprisings happened in 2011 it seemed to be a model for the Middle East. It had elections and an economy that worked and grew. When I asked Davutoglu around that time whether there would be a new Ottoman sphere of influence for the 21st century, he smiled modestly, denied any such ambition and went on to explain that the 2011 uprisings were the true succession to the Ottoman empire. A century of European, and then American, domination was ending. It had been a false start in Middle Eastern history. Now it was back on track. The people of the region were deciding their futures, and perhaps Turkey would have a role, almost like a big brother.

Turkey’s position – straddling east and west, facing Europe and Asia – is the key to its history and its future. It could be, should be, a rock of stability in a desperately un­stable part of the world. But it isn’t, and that is a problem for all of us.

 

Contagion of war

The coup did not come out of a clear sky. Turkey was in deep crisis before the attempt was made. Part of the problem has come from Erdogan’s divisive policies. He has led the AKP to successive election victories since it first won in 2002. But the policies of his governments have not been inclusive. As long as his supporters are happy, the president seems unconcerned about the resentment and opposition he is generating on the other side of politics.

Perhaps that was inevitable. His mission, as a political Islamist, was to change the country, to end the power of secular elites, including the army, which had been dominant since Mustafa Kemal Atatürk created modern Turkey after the collapse of the Ottoman empire. And there is also the influence of chaos and war in the Middle East. Turkey has borders with Iraq and Syria, and is deeply involved in their wars. The borders do not stop the contagion of violence. Hundreds of people have died in the past year in bomb attacks in Turkish cities, some carried out by the jihadists of so-called Islamic State, and some sent by Kurdish separatists working under the PKK.

It is a horrible mix. Erdogan might be able to deal with it better if he had used the attempted coup to try to unite Turkey. All the parliamentary parties condemned it. But instead, he has turned the power of the state against his opponents. More rough times lie ahead.

Jeremy Bowen is the BBC’s Middle East editor. He tweets @bowenbbc

This article first appeared in the 28 July 2016 issue of the New Statesman, Summer Double Issue