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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In the 1980s, I went to a rally where Labour Party speakers shared the stage with men in balaclavas

The links between the Labour left and Irish republicanism are worth investigating.

A spat between Jeremy Corbyn’s henchfolk and Conor McGinn, the MP for St Helens North, caught my ear the other evening. McGinn was a guest on BBC Radio 4’s Westminster Hour, and he obligingly revisited the brouhaha for the listeners at home. Apparently, following an interview in May, in which McGinn called for Corbyn to “reach out beyond his comfort zone”, he was first threatened obliquely with the sack, then asked for a retraction (which he refused to give) and finally learned – from someone in the whips’ office – that his party leader was considering phoning up McGinn’s father to whip the errant whipper-in into line. On the programme, McGinn said: “The modus operandi that he [Corbyn] and the people around him were trying to do [sic], involving my family, was to isolate and ostracise me from them and from the community I am very proud to come from – which is an Irish nationalist community in south Armagh.”

Needless to say, the Labour leader’s office has continued to deny any such thing, but while we may nurture some suspicions about his behaviour, McGinn was also indulging in a little airbrushing when he described south Armagh as an “Irish ­nationalist community”. In the most recent elections, Newry and Armagh returned three Sinn Fein members to the Northern Ireland Assembly (as against one Social Democratic and Labour Party member) and one Sinn Fein MP to Westminster. When I last looked, Sinn Fein was still a republican, rather than a nationalist, party – something that McGinn should only be too well aware of, as the paternal hand that was putatively to have been lain on him belongs to Pat McGinn, the former Sinn Fein mayor of Newry and Armagh.

According to the Irish News, a “close friend” of the McGinns poured this cold water on the mini-conflagration: “Anybody who knows the McGinn family knows that Pat is very proud of Conor and that they remain very close.” The friend went on to opine: “He [Pat McGinn] found the whole notion of Corbyn phoning him totally ridiculous – as if Pat is going to criticise his son to save Jeremy Corbyn’s face. They would laugh about it were it not so sinister.”

“Sinister” does seem the mot juste. McGinn, Jr grew up in Bessbrook during the Troubles. I visited the village in the early 1990s on assignment. The skies were full of the chattering of British army Chinooks, and there were fake road signs in the hedgerows bearing pictograms of rifles and captioned: “Sniper at work”. South Armagh had been known for years as “bandit country”. There were army watchtowers standing sentinel in the dinky, green fields and checkpoints everywhere, manned by some of the thousands of the troops who had been deployed to fight what was, in effect, a low-level counter-insurgency war. Nationalist community, my foot.

What lies beneath the Corbyn-McGinn spat is the queered problematics of the ­relationship between the far left wing of the Labour Party and physical-force Irish republicanism. I also recall, during the hunger strikes of the early 1980s, going to a “Smash the H-Blocks” rally in Kilburn, north London, at which Labour Party speakers shared the stage with representatives from Sinn Fein, some of whom wore balaclavas and dark glasses to evade the telephoto lenses of the Met’s anti-terrorist squad.

The shape-shifting relationship between the “political wing” of the IRA and the men with sniper rifles in the south Armagh bocage was always of the essence of the conflict, allowing both sides a convenient fiction around which to posture publicly and privately negotiate. In choosing to appear on platforms with people who might or might not be terrorists, Labour leftists also sprinkled a little of their stardust on themselves: the “stardust” being the implication that they, too, under the right circumstances, might be capable of violence in pursuit of their political ends.

On the far right of British politics, Her Majesty’s Government and its apparatus are referred to derisively as “state”. There were various attempts in the 1970s and 1980s by far-right groupuscules to link up with the Ulster Freedom Fighters and other loyalist paramilitary organisations in their battle against “state”. All foundered on the obvious incompetence of the fascists. The situation on the far left was different. The socialist credentials of Sinn Fein/IRA were too threadbare for genuine expressions of solidarity, but there was a sort of tacit confidence-and-supply arrangement between these factions. The Labour far left provided the republicans with the confidence that, should an appropriately radical government be elected to Westminster, “state” would withdraw from Northern Ireland. What the republicans did for the mainland militants was to cloak them in their penumbra of darkness: without needing to call down on themselves the armed might of “state”, they could imply that they were willing to take it on, should the opportunity arise.

I don’t for a second believe that Corbyn was summoning up these ghosts of the insurrectionary dead when he either did or did not threaten to phone McGinn, Sr. But his supporters need to ask themselves what they’re getting into. Their leader, if he was to have remained true to the positions that he has espoused over many years, should have refused to sit as privy counsellor upon assuming his party office, and refused all the other mummery associated with the monarchical “state”. That he didn’t do so was surely a strategic decision. Such a position would make him utterly unelectable.

The snipers may not be at work in south Armagh just now – but there are rifles out there that could yet be dug up. I wouldn’t be surprised if some in Sinn Fein knew where they are, but one thing’s for certain: Corbyn hasn’t got a clue, bloody or otherwise. 

Will Self is an author and journalist. His books include Umbrella, Shark, The Book of Dave and The Butt. He writes the Madness of Crowds and Real Meals columns for the New Statesman.

This article first appeared in the 25 August 2016 issue of the New Statesman, Cameron: the legacy of a loser