When it comes to care.data I am currently sitting on the fence, although my perch there has become somewhat less secure of late – news of hospital records being sold to insurers has certainly created a tilt towards the opt out letter to my GP, and it is only Ben Goldacre’s advice to wait 3 months to see if the Government can get its act together that has so far kept the stamp from the envelope.
Like many doctors, I share Dr Goldacre’s enthusiasm for the potential research benefits of the data, and suspect that if the great British public had been asked to donate their information for purely altruistic reasons, then the vast majority would have been enthusiastic in their generosity. The temptation to allow private companies to benefit from the scheme, however, and David Cameron’s desire ‘for the NHS to be working hand-in-glove with industry’, does not inspire us to be selfless with our personal information in quite the same way, and may well derail the whole scheme.
The risk of loss of confidentiality is clear, but I have another concern that has not been much talked about in this debate, which is the way statistics are repeatedly misused in attempts to scrutinise the NHS, which risks leading to distortions of behaviour by healthcare providers and resultant poorer care for patients.
The classic example of this is the use of Hospital Standardised Mortality Ratios (HSMRs), which are obtained using the hospital data which has been shared centrally for many years in a similar scheme. Professor Black, who has been charged to examine how useful these figures are, was outspoken this week when he declared that the public should ignore them as they are so misleading and can be too easily altered. Dr Foster, the organisation that publishes these figures, was robust in their defence – but their business model depends upon them, so while they might be a witness in this debate, they should in no way be considered an expert with an impartial view. Nor is this the first time the use of HSMRs has been questioned; a Department of Health document in 2008 stated that ‘HSMR league tables and rankings are likely to be misleading and can create unnecessary concern, or unjustified confidence, for patients and the public about the quality of their local services.’ Despite this, Dr Foster continues to publish such tables unabashed – here is a league table from 2011, and the 2013 data will use them in the same way. Only this November, the Health Secretary showed his love for publishing death rates, announcing they would be published on a new website – seemingly unaware of just how misleading this could be.
So what does this mean for care.data? One of the key justifications for this programme is to ‘improve the public’s understanding of the outcomes of care, giving them confidence in health and care services.’ This is health speak for: ‘to improve the Government’s ability to scrutinise the NHS so that they can keep up the pressure for change.’ I have no problem with services being scrutinised; I am not in some delusional state that all NHS care is exemplary and above reproach and I welcome inspections and feedback – provided they can be done in the right manner. What I don’t trust at all, however, is the ability of any Government to resist a tasty statistic.
What if the GP data is used to look at mortality rates, for instance? How tempting would that be as a way to rid the NHS of under-performing doctors? Who wouldn’t want to register with a GP who was good at saving lives? Would the politicians care that the numbers would be small, so the errors in such figures would be worryingly large? Well, that hasn’t stopped them drilling down dementia diagnosis rates to the level of an individual practice, or demanding that there can be no excuses if the tiny number of SEN children in a class fail to perform as well as their peers – the idea of statistical significance is one for the boffins to worry about, not hard-working politicians.
I can see the league tables now – and I know with certainty that I would appear some distance above one of my partners. This is not due to some smug self-confidence in my remarkable ability to keep my patients going, but the fact that he looks after a nursing home while I do not, and the home has a habit of taking patients from the hospital for palliative care – no doubt in order to help them keep down their HSMR. The work involved in caring for these patients is immense – getting to know them, understanding their wishes, communicating with the family, advanced care planning, pre-emptive prescribing – all done in the matter of 2-3 weeks before the end. It is not unrewarding, and he doesn’t complain, but I am appalled by the idea that he might be punished by finding his name at the wrong end of a list of shame purely because this work also involves signing more death certificates.
Maybe I am just scare-mongering along with everyone else. In a way I hope so, but before I can sign up to this scheme I need to know that not just my personal data is safe in the Government’s hands, but that the NHS is safe there also – and there the loss of trust is far deeper than just a bad headline about an insurance company.
Now where’s that stamp?
Dr Martin Brunet is a GP in Guildford and programme director of the Guildford GPVTS. You can tweet him @DocMartin68
20 December 2021
21 September 2021