Data wars

The plan by NHS England to upgrade its patient data system is eminently sensible. Without accurate data, the NHS is flying blind and has no chance of delivering the highest quality care and spotting unsafe care, and the opportunities to use the data for research to benefit patients are potentially huge. So why has it met with such opposition?

The simplest answer is that the government and NHS England aren’t universally trusted to keep such large volumes of confidential  medical information safe or not to sell it off for commercial gain. The government promised no major top down reorganization of the NHS and then imposed the largest in its history, leading many to conclude the resultant chaos is simply a Trojan horse for privatization. Selling patient data – identifiable or not – onto private companies just amplifies the mistrust even if it is claimed to be for patient benefit.

The default option is ‘opt in’ (you have to tell your GP if you don’t want your data to be used) but the choice  is ‘all or nothing’ – you can’t select where your data might end up but have to trust the NHS to make decisions in your best interests without consulting you. However, the fear that insurance companies will get hold of the data is a red herring since patients who have health insurance have to fully disclose all their medical details directly to the insurer, and any inaccuracy (deliberate or not) can nullify their policy.

NHS England is however very keen to collaborate with the private sector. Tim Kelsey, the NHS England director for patients and information, came from the private data-mining company Dr Foster and Kingsley Manning, founder and managing director of health and information consultancy firm Newchurch, has been appointed chair of the Health and Social Care Information Centre (HSCIC), which NHS England has trusted to oversee the ‘care.data’ program. HSCIC’s new chief executive Andy Williams has worked for IBM, Alcatel-Lucent and CSC.

Most patients haven’t got a clue what care.data or the HSCIC is, and the leaflet destined to drop on your doorstep is very simplistic. Kelsey recently went on Radio 4 to promise there was ‘no risk of patients of confidential information being identified as a result of care.data…. Can I be categorical? No one who uses this data will know who you are.’ Alas, there is no such thing as zero risk and it is possible (though probably illegal) to re-identify patients from some of the data.

Three types of data are collected – anonymous or aggregated (green) data, pseudonymised  (amber) data and personal confidential (red) data. Green data is published free of charge for all to see, and allows anonymous comparisons of how different diseases are managed in different parts of the country. (e.g. your chances of having a limb amputation if you have diabetes varies widely across the NHS). For very rare conditions, it might be possible to deduce who the patients in a particularly area are because there aren’t many of them, so the HSCIC shouldn’t publish these.

For pseudonymised (amber) data, patient’s identifiers (e.g. date of birth, postcode, NHS number) are replaced  them with a meaningless pseudonym that bears no relationship to their identity. Amber data is very useful because it tracks how individual patients interact with the different parts of the NHS and social care over time. However, it is theoretically possible for analysts  to re-identify individuals within amber data by linking them to other data sets. The HSCIC shouldn’t publish amber data, but such hospital data is already made available to universities and private companies  under a legal contract  ‘to approved analysts for approved purposes’. The contract stipulates how the data must be stored and protected, and how the data must be destroyed afterwards. But that of course doesn’t guarantee it will happen in all cases.

Red data does identify you and the HSCIC may pass it on in a public health emergency such as an epidemic when legally required to do so. It is proposed that such data may also be made available ‘to an organisation that has obtained the patient’s explicit consent or has been granted legal approval by the Secretary of State for Health or the Health Research Authority following independent advice from the Confidentiality Advisory Group (CAG).’ The CAG members are here¹ and you can decide if you trust them to override confidentiality when the research benefit warrants it  and it is not possible to use information that does not identify patients.

The NHS has been keeping hospital data safe for 25 years and it’s important to complete the data by linking it to care provided outside hospital. However, to state that there is ‘no risk’ that patients will be identified is simply wrong, particularly as applications to access the data from a wide variety of interested parties are likely to increase dramatically. It would have been far better to argue that the potential benefits vastly outweigh the risks. And bullying GPs into releasing their patients’ data as required by the Health Act when they have yet to be convinced it is safe to do so is simply wrong. GPs have been ordered to release pseudonymous information to the HSCIC for sorting, and some are worried about  breaches of confidentiality. It would have been far more sensible to give patients easy access to their own data first so they can decide if they wish to pass it on.

A bigger issue for an NHS already swimming with data is whether it will be used to benefit patients. From the Bristol heart scandal to Mid Staffs, the NHS has shown itself incapable of acting swiftly on outlying data to protect patients from avoidable harm, and keeping data ‘in house’ has often meant burying scandals. Independent analysis and scrutiny of what the NHS is up to is no bad thing. As for drug companies, MD has no objection to  his data going to them provided they have signed up to www.alltrials.net and agree to publish all of their clinical trials. The hallmark of any safe data system is publishing disappointing or distressing data even if it is politically or commercially embarrassing. The bottom line? No more dirty secrets in the NHS.

There is ‘a dedicated patient information line’ about care.data on 0300 456 3531. Or you can try to talk to your GP

1 http://www.hra.nhs.uk/about-the-hra/our-committees/section-251/cag-members/

Another Bristol Inquiry

NHS clinical director Brice Keogh ordered an inquiry into the safety of child heart surgery in Bristol last week, based on concerns raised by a group of parents about the care of their children – but failed to say whether the current service is safe for babies having operations now.

If he has concerns, he must surely suspend surgery now pending an urgent independent investigation, or he must state publicly that the service is no less safe than other UK units. To do neither has caused enormous stress to the parents of those babies currently due for surgery who may – or may not – be at unacceptable risk.

Bristol’s current ‘outcome’ figures are comparable to any other NHS unit but due to the failure to reorganise heart surgery after the initial scandal exposed in the Eye in 1992, every NHS unit is now struggling to recruit enough qualified staff, particularly nurses, to cope with the increase in surgery. Keogh must sort this out urgently.

Update: On the day of publication of Private Eye, NHS England issues a safety statement about child heart surgery in Bristol now.

http://www.england.nhs.uk/2014/02/19/childrens-heart-surgery/

You can also hear me interview Miss Bryony Strachan, Clinical Chair of the Division of Women’s and Children’s Services at University Hospitals Bristol NHS Foundation Trust, and Professor of Paediatric Cardiology Rob Tulloh here, between 10.05 And 10.30 AM. They talk openly and at length about the safety of the unit and the complexities of the work they do.

http://www.bbc.co.uk/programmes/p001d79q

What concerns me is the disconnect between the outcome figures for Bristol, which are within the range of the other units, and the very worrying experiences of some parents. In my view, there needs to be a swift investigation by independent clinical and human factors experts that is published in full. And until child heart surgery is sensibly recognised in the NHS, most units will continue to struggle with understaffing and suboptimal supervision and training. Parents can in theory choose to go to another unit if they have concerns about their local one, but this is not without additional stress and difficulty. Far better to ensure all NHS units are safe and up to standard, and to publish real time patient/parent experiences alongside retrospective death rates which remain a fairly crude way of judging quality of care.

Hunt’s Law

Hidden away near the back of the government’s Care Bill, which is supposed to be about improving the care of the most vulnerable patients, is an incendiary clause that could give enormous power to the Health Secretary, via one of his Trust Special Administrators (TSAs), to reorganise failing hospitals and their neighbours without much in the way of consultation. Ironically, this could jeopardise the care of the very patients the Care Bill aims to protect.

Clause 118 is seen by many as payback for Jeremy Hunt’s failure to push through the downscaling of Lewisham hospital to bail out a neighbouring South London healthcare trust (SLHT), a failing hospital with huge debts, mainly as the result of a Private Finance Initiative mortgage with unaffordable interest payments. (Eyes passim)  TSA Matthew Kershaw and Hunt tried to downgrade the thriving and solvent Lewisham hospital to take some of the pain for its failing neighbour. But the High Court and Court of Appeal found using such an approach – where one hospital is used as collateral damage for another, when it had no connection to the cause of the debt – to be unlawful.  So Hunt is trying to change the law.

A TSA is only supposed to be appointed under the most dire of circumstances when a hospital’s balance sheet is beyond the point of no return but under Clause 118, failing hospitals can be defined more broadly, and many are now in debt due to the flat line funding in the NHS. And once a hospital is defined as ‘failing’, any hospital or community provision which has a relation to that failing hospital could in theory be reorganised, asset-stripped or even privatised. The ability of local Clinical Commissioning Groups  to contest the plans can be overridden, local people’s ability to challenge is also restricted and – in the initial reading, Local Authority Scrutiny is disallowed.

The government has now published amendments to the Bill that will make the TSA consult more widely, and hold a few more meetings, but both the King’s Fund and the Nuffield Trust have warned of the power that  Clause 118 could give the Secretary of State to mandate change in NHS services without the support of local commissioners or the public. And Hunt can say he’s only acting on the advice of a  TSA who the public may not trust or agree with.

The promise of the Health and Social Care Act was that decision making would be devolved locally, with patients and local NHS staff having most power in deciding how services were run.  Or as Andrew Lansley was fond of pretending, ‘No decision about me without me.’ Clause 118 pulls back power to the centre and largely excludes local people from anything but a cursory conversation about the future of their local hospital.

In the NHS, it always comes down to trust.  Do patients trust Jeremy Hunt and whatever Trust Special Administrator he appoints to sort out their failing hospital and to  reach a decision that is in their best interests, given the dire financial circumstances in the NHS? Politicians have repeatedly blown their chance to have an honest and open debate about what the NHS can and can’t afford by imposing expensive and unnecessary reforms that have neither a mandate nor an evidence base. The suspicion that the NHS is being sold off has become a reality (Eye last), and Hunt has probably realised he has no hope of convincing the public of the need for reconfiguration, particularly as his most high profile attempt so far was deemed illegal. So he is changing the law and  give him, NHS England and the market regulator Monitor  far more power to make changes with a minimum of consultation. Some of the changes might even be quite sensible. But it’s no way to restore trust or unite the NHS.