Data farrago

Very quietly, last month, NHS Digital, the national authority that governs information relating to health and social care provision in England, renewed its memorandum of understanding (MoU) with the Home Office to share information about ‘immigration offenders’ (such as those entering the UK without proper papers and asylum seekers who have had their asylum claims rejected).  The original MoU between NHS Digital and the Home Office was introduced, very quietly, over a year ago.

The powers that allow NHS Digital to disclose information were introduced in the Health and Social Care Act 2012, which sets out, among other things, the functions of the Health and Social Care Information Centre (HSCIC), the predecessor of NHS Digital and the body at the centre of the ‘care.data’ fiasco.[i] The HSCIC was itself the successor to the NHS Information Centre, the body criticised in the ‘Partridge report’ for information disclosure irregularities.  (While the sign above the door changes after each successive gaucherie, the business is essentially continuous.)  The MoU, in effect, sets out how NHS Digital proposes to exercise the discretion the Act gives it to disseminate data that it holds in certain cases.

We wrote about repurposing of data in our 2015 report The collection, linking and use of data in biological research and health care: ethical issues.  This particular repurposing of data collected in health care settings for immigration enforcement is worrying for several reasons.[ii]

  • There is a recognised, fundamental right to health care (for example, under Article 35 Charter of Fundamental Rights of the EU) that is menaced by attaching strings to it in this way.
  • Very practically, the threat of disclosure may result in ‘immigration offenders’ avoiding seeking medical treatment when they need it. This could be catastrophic not only to their own and their families’ health but also for public health and disease surveillance (TB and tropical diseases, for example, being conditions that immigrants are more likely than indigenous citizens to have and to spread).
  • It is not only the data that are repurposed: the MoU corrupts of the role of medical professionals making them, in effect, police informants and confuses the function of medical records. This is, in turn, corrosive to the ethos of NHS, and liable to undermine public confidence in the integrity of the health system and the confidentiality of its records.
  • Admittedly, the duty of confidence owed to patients by health professionals is not absolute but the scope of ‘public interest’ in disclosure is arguably not so broad as that which the MoU advances – and would not meet the threshold for disclosure by doctors recommended by the GMC.[iii] Sharing data in this way may be counterproductive as – like with care.data – it is liable to foment unwillingness on the part of the medical profession to supply data to NHS Digital.
  • The function creep and convergence of databases such as those under the control of NHS Digital may yet tend to realise fears that animated the original data protection legislation of the 1980s, that a government would build a ‘data bank’ that could be used for the generalised surveillance of citizens.[iv] The argument that if one has nothing to hide, one has nothing to fear has been scotched by erosions of privacy and unintended discriminatory outcomes have been noted in the case of other databases.[v]

Though the lawfulness of this latest repurposing may fall to be determined in a court, it is at least as much about culture as legality.  In many ways NHS Digital is culturally at odds with the medical profession and the jealousy with which it defends both the sanctity of its direct relationship with patients and its trusted place in the national consciousness.  NHS Digital is designed to make data work as a resource for the public, not just for the individual: at policy and commercial as well as therapeutic levels.  (This has been a main plank of bioscience strategy since 2011, which could be glossed as: yoke up the NHS to the wider economy and bet the farm on the prospects of genomics.)  It is only given a darker twist by the relationship with the Home Office and its agencies, who are single-mindedly focussed on dealing with ‘immigration offenders’ and stamping out the net ‘economic harm’ they allegedly do to the country.

NHS Digital wants to put the data it holds to work to improve health care delivery; doctors want to safeguard the rights of their patients to receive care without strings attached; the Home Office wants to deal with immigration offences.  All are claiming, and perhaps (who knows?) striving earnestly, to act in the public interest. But there are manifest inconsistencies here.  This is where we need to focus our discussion: as long as the public interest is framed by the private and the partial, there is no public interest.

[i] See previous posts on this blog, e.g. my Care.data: What’s in a dot and what’s a dot not? and  Bringing down the knowledge deficit, and Trust and transparency must underpin technological change (a guest post by Tony Calland, formerly chair of the BMA Ethics Committee and recently appointed Chair of the Health Research Authority Confidentiality Advisory Group).

[ii] I raised these points with journalist, Shirley Wang, for a piece she wrote for the Politico Pro news service.  I restate them here because her excellent piece is only accessible via the service’s paywall.

[iii] According to John Chisholm, Chair of the BMA Ethics Committee, quoted in Shirley S. Wang, Plan to expand use of NHS data for surveillance sparks concerns, Politico Pro (22 January 2018) https://www.politico.eu/pro/plan-to-expand-british-uk-nhs-data-for-surveillance-sparks-concerns/ (paywall)

[iv] See discussions around the Younger and Lindop reports in the context of the emergence of electronic computing and information technology in the 1970s.  A new Data Protection Bill is currently making its way through Parliament and it therefore seems timely to recall the fears that animated the original Acts.

[v]  See, for example, the Human Genetics Commission’s report on the police National DNA Database Nothing to Hide, Nothing to Fear?

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