Friday, 4 June 2010

NHS database monster lives

On Conservative Home, Alex Deane notes that yesterday, when the nation's collective mind was focused on the events in Cumbria, the government slipped out in a written answer the news that New Labour's largest and most controversial health database was alive and well. The creation and uploading of Summary Care Records will "continue to take place", said the minister, Simon Burns, "where the relevant general practitioner practices and primary care trusts agree that patients have been adequately informed." This is the precise policy announced by the Department of Health on May 5th, the day before the election.

This is incredibly depressing. Apart from anything else, it counts (for me at least) as the first major broken promise by the Lib/Con coalition government. Deane thinks it "a disgraceful u-turn" which shows the Coalition has failed its first real test. So do I.

In their manifestos, both parties now in government railed against the ruinously expensive and intrusive IT schemes adopted by the NHS under Labour. Last year the Conservatives promised to dismantle the central NHS IT infrastructure, while in March this year the Lib Dems' Norman Lamb described it as "a disastrous waste of money" which "should be abandoned."

So it was a fair bet that the processes of uploading the medical records of millions of patients - including highly sensitive personal information - to a vast central database accessible by hundreds of thousands of NHS staff would come to an end once the new government got its feet under ministerial tables.

Indeed, when local primary care trusts began sending out letters a few months ago, extolling the virtues of the new "Connecting for Health" scheme and stressing that anyone who chose to opt out (a process made deliberately cumbersome) was putting themselves at risk of INSTANT DEATH, eyebrows were raised. The BMA criticised the manner in which it was being implemented at "breakneck speed", and there were strong suspicions that an attempt was under way to present the new government with a fait accompli. It was revealed that the government was offering financial incentives to trusts who expedited the process, and that some of the uploaded records.

There have been concerns about inaccurate information being uploaded to the database, and proving difficult to correct. Tony Collins of Computer Weekly reported on the experience of a Hastings GP, Dr Linda Parker that the new system had proved "a complete disaster for the practice". The local health authority, Collins noted, appeared to be in a state of denial about the problems, evidence he thought that the process was "infused with politics".

The process carried on despite the calling of the general election. My letter arrived in April, promising "better and safer care" and assuring me that there would be "strict security measures" controlling access to the data. The accompanying leaflet was full of pictures of smiling, if alarmingly young, doctors posed next to computers. The record would enable the NHS to provide "more effective care", it told me. I'm opting out. I haven't seen a doctor in well over a decade and have no intention of doing so until such time as I start falling to pieces. But this is a matter of principle.

Apart from anything else, I didn't want to add to the unnecessary expense of putting into practice a scheme which, I was sure, would fall victim to the first swing of the cost-cutting axe. The last government squandered £12 billion setting up the NHS computer system - great news for the firms who are happy to supply a techno-illiterate civil service with overpriced and over-elaborate "solutions" but bad for everyone else.

Then there are the privacy concerns, of course. Whatever "safeguards" are put in place never seem to prevent leaks, hacking, losses and, in some cases, criminal misuse. Only not having centralised databases at all - keeping data dispersed and accessible only by a few - minimises the danger. And with health records the danger is real. Under the SCR scheme, information about such intimate subjects as sexual history or mental health could be made available to anyone treating you for a broken leg. Worst of all, perhaps, people will be discouraged from telling their doctor sensitive information by the knowledge that it will be uploaded and placed at the mercy of a massive and flawed system.

The current system of paper records, kept locally, works perfectly well. As it said in the leaflet, "Today, records are kept in all the places where you receive care. These organisations can usually only share information from your records by letter, email, fax or phone." It went on to suggest that this was a bad thing. I regard it as a good thing.

But, like I said, it wasn't going to happen. When Guy Aitchison contacted me a fortnight ago with news that Power 2010 was making the SCR upload the subject of its latest campaign, I wondered whether it was not a waste of their valuable time. At the very least, they were pushing at an open door. It seems not.

Introducing the campaign, Pam Giddy wrote:

Connecting for Health is trying to push us past the point of no return by uploading a critical mass of medical records to the Summary Care Record.

The "accelerated roll-out" of Summary Care Records is not about patient care, but is rather a blatant attempt by CfH to preserve a heavily-criticised, extremely costly IT programme that - on the evidence of two independent studies - delivers few of the claimed benefits.

What it does deliver is a complete and total invasion of privacy, which is next to impossible to opt-out of.

Power 2010 is encouraging people to contact their MP, and the Health Secretary Andrew Lansley, to call a halt to the mass upload, "pending a full inquiry". The pre-election positions of both parties implied that they fully intended to do so. So what happened? It might just be a holding statement. But the new government lost no time in announcing its intention to get rid of ID cards. It seems as though in this instance ministers are simply going along with the DoH, which has been acting as though there had been no election and no change of government.

It doesn't bode well. Other expensive and unnecessary programmes that also attracted criticism from Lib Dems and Tories before the election, such as the ISA scheme for vetting millions of workers and volunteers who might come into contact with children, would also seem to be proceeding regardless. The database state evidently has Dracula-like powers of survival.

I'll be stocking up on garlic.