Hospital episode data – confidential data uploaded by mistake

Rather hidden away in the new IIGOP annual report is a worrying and revealing report of a serious data breach involving hospital episode data

In February last year Tim Kelsey, NHS England’s National Director for Patients and Information, and vocal cheerleader for the care.data initiative, assured the public, in an interview on the Radio 4 Today programme, that in the twenty five years that Hospital Episode Statistics (HES) have been shared with other organisations

the management of the hospital episode database…there has never been a single example of that data being compromised, the privacy of patients being compromised…

However, as Sir Nick Partridge’s Review of Data Releases by the NHS Information Centre in June of last year revealed, there had been

lapses in the strict arrangements that were supposed to be in place to ensure that people’s personal data would never be used improperly

As I said at the time

One waits with interest to see whether the [Information Commissioner’s Office (ICO)] will take any enforcement action, but I think it’s important that they consider doing so, because, even though Sir Nick makes nine very sensible recommendations to HSCIC, one could be forgiven – having been given clear assurances previously, by the likes of Tim Kelsey and others – for having reservations as to future governance of our confidential medical data

Now, with the launch of the first annual report of the Independent Information Governance Oversight Panel (IIGOP), chaired by Dame Fiona Caldicott and established at the request of the Secretary of State to “advise, challenge and report on the state of information governance across the health and care system in England”, we see further evidence of HES data “being compromised, the privacy of patients being compromised”. The report informs us of an incident whereby

New inspection procedures introduced by the HSCIC had uncovered a number of organisations which were sending HES data and failing to follow data dictionary standards. This meant they were inadvertently enabling personal confidential data to enter the data base. Following an alert to the Information Commissioners’ Office this was understood as a large scale problem, although having a low level potential impact, as the affected data fields were unknown to either senders or receivers of HES data. The relevant organisations were contacted to gain their cooperation in closing the breach, without alerting any unfriendly observer to the location of the confidential details. This was important to preserve the general ignorance of the detail of the breach and continue to protect individuals’ privacy. Trusts and others were encouraged to provide named contacts who would then start cleaning up their data flows to the HSCIC. In order to manage any untoward reporting in the media, trade titles were informed and briefed about the importance of restricting their reporting to avoid any risk of leading people towards this confidential data.

Now this to me seems pretty serious: those organisations who failed to “follow data dictionary standards” by data controller organisations who were sending HES data sounds very likely to be a contravention of the data controllers’ obligation, under section 4(4) of the Data Protection Act 1998 (DPA) to comply with the seventh data protection principle, which requires that they take

Appropriate technical and organisational measures…against unauthorised or unlawful processing of personal data

Serious contraventions, of a kind likely to cause substantial damage or substantial distress, can result in the ICO serving a monetary penalty notice, under section 55A of the DPA, to a maximum of £500,000.

So, what does one make of these incidents? It’s hard to avoid the conclusion that they would be held to be “serious”, and if the data in question had been misused, there would have been the potential for substantial damage and substantial distress – public disclosure of hospital record data could have a multitude of pernicious effects – and this much is evidenced by the fact that (successful) attempts had to be made to avoid the errors coming to light, including asking journalists to avoid reporting. But were they contraventions likely to cause these things? IIGOP suggests that they had a “low level potential impact” because the data was hidden within large amounts of non-offensive data, and I think it is probably the case that the incidents would not be held to have been likely to cause substantial damage or substantial distress (in Niebel, the leading case on monetary penalty notices, Wikeley J in the Upper Tribunal accepted that the likely in s55A DPA took the same meaning attributed to it by Munby J, in R (Lord) v Secretary of State for the Home Department [2003] EWHC 2073 (Admin), namely “‘likely’ meant something more than ‘a real risk’, i.e. a significant risk, ‘even if the risk falls short of being more probable than not'”).

But a monetary penalty notice is not the only action open to the ICO. He has the power to serve enforcement notices, under s40 DPA, to require data controllers to do, or refrain from doing, specified actions, or to take informal action such as requiring the signing of undertakings (to similar effect). Given that we have heard about these incidents from IIGOP, and in an annual report, it seems unlikely that any ICO enforcement action will be forthcoming. Perhaps that’s correct as a matter of law and as a matter of the exercise of discretion, but in my view the ICO has not been vocal enough about the profound issues raised by the amalgamation and sharing of health data, and the concerns raised by incidents of potentially inappropriate or excessive processing. Care.data of course remains on the agenda, and the IIGOP report is both revealing and encouragingly critical of what has taken place so far, but one would not want a situation to emerge where the ICO took a back seat and allowed IIGOP (which lacks regulatory and enforcement powers) to deal with the issue.

The views in this post (and indeed all posts on this blog) are my personal ones, and do not represent the views of any organisation I am involved with.

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Filed under care.data, Data Protection, data sharing, Information Commissioner, NHS

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