Does the Partridge Review of NHS transfers of hospital episode patient data point towards one of the biggest DPA breaches ever?
In February this 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…
When pressed by medConfidential‘s Phil Booth about this, and about risks of reidentification from the datasets, Tim repeated that no patient’s privacy had been compromised.
Some of us doubted this, as news of specific incidents of data loss emerged, and even more so as further news emerged suggesting that there had been transfers (a.k.a. sale) of huge amounts of potentially identifiable patient data to, for instance, the Institute and Faculty of Actuaries. The latter news led me to ask the Information Commissioner’s Office (ICO) to assess the lawfulness of this processing, an assessment which has not been completed four months later.
However, with the publication on 17 June of Sir Nick Partridge’s Review of Data Releases by the NHS Information Centre one questions the basis for Tim’s assertions. Sir Nick commissioned PwC to analyse a total of 3059 data releases between 2005 and 2013 (when the NHS Information Centre (NHSIC) ceased to exist, and was replaced by the Health and Social Care Information Centre HSCIC). The summary report to the Review says that
It disappoints me to report that the review has discovered lapses in the strict arrangements that were supposed to be in place to ensure that people’s personal data would never be used improperly
and it reveals a series of concerning and serious failures of data governance, including
- lack of detailed records between 1 April 2005 and 31 March 2009
- two cases of data that was apparently released without a proper record remaining of which organisation received the data
- [no] evidence that Northgate [the NHSIC contractor responsible for releases] got permission from the NHS IC before making releases as it was supposed to do
- PwC could not find records to confirm full compliance in about 10% of the sample
Sir Nick observes that
the system did not have the checks and balances needed to ensure that the appropriate authority was always in place before data was released. In many cases the decision making process was unclear and the records of decisions are incomplete.
It also seems clear that the responsibilities of becoming a data controller, something that happens as soon as an organisation receives data under a data sharing agreement, were not always clear to those who received data. The importance of data controllers understanding their responsibilities remains vital to the protection of people’s confidentiality
(This resonates with my concern, in my request to the ICO to assess the transfer of data from HES to the actuarial society, about what the legal basis was for the latter’s processing).
Notably, Sir Nick dispenses with the idea that data such as HES was anonymised:
The data provided to these other organisations under data sharing agreements is not anonymised. Although names and addresses are normally removed, it is possible that the identity of individuals may be deduced if the data is linked to other data
And if it was not anonymised, then the Data Protection Act 1998 (DPA) is engaged.
All of this indicates a failure to take appropriate technical and organisational measures shall be taken against unauthorised or unlawful processing of personal data, which the perspicacious among you will identify as one of the key statutory obligations placed on data controllers by the seventh data protection principle in the DPA.
Sir Nick may say
It is a matter of fact that no individual ever complained that their confidentiality had been breached as a result of data being shared or lost by the NHS IC
but simply because no complaint was made (at the time – complaints certainly have been made since concerns started to be raised) does not mean that the seventh principle was not contravened, in a serious way. And a serious contravention of the DPA of a kind likely to cause substantial damage or substantial distress can potentially lead to the ICO serving a monetary penalty notice (MPN) to a maximum of £500,000 (at least for contraventions after April 2010, when the ICO’s powers commenced).
The NHSIC is no more (although as Sir Nick says, HSCIC “inherited many of the NHS IC’s staff and procedures”). But that has not stopped the ICO serving MPNs on successor organisation in circumstances where their predecessors committed the contravention. One waits with interest to see whether the 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. I would suggest it is imperative that HSCIC know that their processing of personal data is now subject to close oversight by all relevant regulatory bodies.