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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"We repealed, then forgot": the long shadow of Section 28 homophobia

Why are deeply conservative views about the "promotion" of homosexuality still being reiterated to Scottish school pupils? 

Grim stories of LGBTI children being bullied in school are all too common. But one which emerged over the weekend garnered particular attention - because of the echoes of the infamous Section 28, nearly two decades after it was scrapped.

A 16-year-old pupil of a West Lothian school, who does not wish to be named, told Pink News that staff asked him to remove his small rainbow pride badge because, though they had "no problem" with his sexuality, it was not appropriate to "promote it" in school. It's a blast from the past - the rules against "promoting" homosexuality were repealed in 2000 in Scotland, but the long legacy of Section 28 seems hard to shake off. 

The local authority responsible said in a statement that non-school related badges are not permitted on uniforms, and says it is "committed to equal rights for LGBT people". 

The small badge depicted a rainbow-striped heart, which the pupil said he had brought back from the Edinburgh Pride march the previous weekend. He reportedly "no longer feels comfortable going to school", and said homophobia from staff members felt "much more scar[y] than when I encountered the same from other pupils". 

At a time when four Scottish party leaders are gay, and the new Westminster parliament included a record number of LGBTQ MPs, the political world is making progress in promoting equality. But education, it seems, has not kept up. According to research from LGBT rights campaigners Stonewall, 40 per cent of LGBT pupils across the UK reported being taught nothing about LGBT issues at school. Among trans students, 44 per cent said school staff didn’t know what "trans" even means.

The need for teacher training and curriculum reform is at the top of campaigners' agendas. "We're disappointed but not surprised by this example," says Jordan Daly, the co-founder of Time for Inclusive Education [TIE]. His grassroots campaign focuses on making politicians and wider society aware of the reality LGBTI school students in Scotland face. "We're in schools on a monthly basis, so we know this is by no means an isolated incident." 

Studies have repeatedly shown a startling level of self-harm and mental illness reported by LGBTI school students. Trans students are particularly at risk. In 2015, Daly and colleagues began a tour of schools. Shocking stories included one in which a teacher singled out a trans pupils for ridicule in front of the class. More commonly, though, staff told them the same story: we just don't know what we're allowed to say about gay relationships. 

This is the point, according to Daly - retraining, or rather the lack of it. For some of those teachers trained during the 1980s and 1990s, when Section 28 prevented local authorities from "promoting homosexuality", confusion still reigns about what they can and cannot teach - or even mention in front of their pupils. 

The infamous clause was specific in its homophobia: the "acceptability of homosexuality as a pretended family relationship" could not be mentioned in schools. But it's been 17 years since the clause was repealed in Scotland - indeed, it was one of the very first acts of the new Scottish Parliament (the rest of the UK followed suit three years later). Why are we still hearing this archaic language? 

"We repealed, we clapped and cheered, and then we just forgot," Daly says. After the bitter campaign in Scotland, in which an alliance of churches led by millionaire businessman Brian Souter poured money into "Keeping the Clause", the government was pleased with its victory, which seemed to establish Holyrood as a progressive political space early on in the life of the parliament. But without updating the curriculum or retraining teaching staff, Daly argues, it left a "massive vacuum" of uncertainty. 

The Stonewall research suggests a similar confusion is likely across the UK. Daly doesn't believe the situation in Scotland is notably worse than in England, and disputes the oft-cited allegation that the issue is somehow worse in Scotland's denominational schools. Homophobia may be "wrapped up in the language of religious belief" in certain schools, he says, but it's "just as much of a problem elsewhere. The TIE campaign doesn't have different strategies for different schools." 

After initial disappointments - their thousands-strong petition to change the curriculum was thrown out by parliament in 2016 - the campaign has won the support of leaders such as Nicola Sturgeon and Kezia Dugdale, and recently, the backing of a majority of MSPs. The Scottish government has set up a working group, and promised a national strategy. 

But for Daly, who himself struggled at a young age with his sexuality and society's failure to accept it, the matter remains an urgent one.  At just 21, he can reel off countless painful stories of young LGBTI students - some of which end in tragedy. One of the saddest elements of the story from St Kentigern's is that the pupil claimed his school was the safest place he had to express his identity, because he was not out at home. Perhaps for a gay pupil in ten years time, that will be a guarantee. 

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