Opting patients out of care.data – in breach of data protection law?

The ICO appear to think that GPs who opt patients out of care.data without informing them would be breaching the Data Protection Act.  They say it would be unfair processing

In February of this year GP Dr Gordon Gancz was threatened with termination of his contract, because he had indicated he would not allow his patients’ records to be uploaded to the national health database which as planned to be created under the care.data initiative. He was informed that if he didn’t remove information on his website, and if he went on to add “opt-out codes” to patients’ electronic records, he would be in breach of the NHS (GMS contract) Regulations 2004. Although this threatened action was later withdrawn, and care.data put on hold for six months, Dr Gancz might have been further concerned to hear that in the opinion of the Information Commissioner’s Office (ICO) he would also have been in breach of the Data Protection Act 1998 (DPA).

A few weeks ago fellow information rights blogger Tim Turner (who has given me permission to use the material) asked NHS England about the basis for Health Services Minister Dan Poulter’s statement in Parliament that

NHS England and the Health and Social Care Information Centre will work with the British Medical Association, the Royal College of General Practitioners, the Information Commissioner’s Office and with the Care Quality Commission to review and work with GP practices that have a high proportion of objections [to care.data] on a case-by-case basis

Tim wanted to know what role the ICO would play. NHS England replied saying, effectively, that they didn’t know, but they did disclose some minutes of a meeting held with the ICO in December 2013. Those minutes indicate that

The ICO had received a number of enquiries regarding bulk objections from practices. Their view was that adding objection codes would constitute processing of data in terms of the Data Protection Act.  If objection codes had been added without writing to inform their patients then the ICO’s view was that this would be unfair processing and technically a breach of the Act so action could be taken by the ICO

One must stress that this is not necessarily a complete or accurate respresentation of the ICO’s views. However, what appears to be being said here is that, if GPs took the decision to “opt out” their patients from care.data, without writing to inform them, this would be an act of “processing” according to the definition at section 1(1) of the DPA, and would not be compliant with the GPs’ obligations under the first DPA principle to process personal data fairly.

On a very strict reading of the DPA this may be technically correct – for processing of personal data to be fair data subjects must be informed of the purposes for which the data are being processed, and, strictly, adding a code which would prevent an upload (which would otherwise happen automatically) would be processing of personal data. And, of course, the “fairness” requirement is absent from the proposed care.data upload, because Parliament, in its wisdom, decided to give the NHS the legal power to override it. But “fairness” requires a broad brush, and the ICO’s interpretation here would have the distinctly odd effect of rendering unlawful a decision to maintain the status quo whereby patients’ GP data does not leave the confidential confines of their surgery. It also would have the effect of supporting NHS England’s apparent view that GPs who took such action would be liable to sanctions.

In fairness (geddit???!!) to the ICO, if a patient was opted out who wanted to be included in the care.data upload, then I agree that this would be in breach of the first principle, but it would be very easily rectified, because, as we know, it will be simple to opt-in to care.data from a previous position of “opt-out”, but the converse doesn’t apply – once your data is uploaded it is uploaded in perpetuity (see my last bullet point here).

A number of GPs (and of course, others) have expressed great concern at what care.data means for the confidential relationship between doctor and patient, which is fundamental for the delivery of health care. In light of those concerns, and in the absence of clarity about the secondary uses of patient data under care.data, would it really be “unfair” to patients if GPs didn’t allow the data to be collected? Is that (outwith DPA) fair to GPs?

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

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