Baroness Ludford: Respond to the 700,000 requests to opt out of medical data sharing

The care.datascheme is a highly controversial plan by the Health and Social Care Information Centreand NHS Englandto create a database grouping together hospital records (which they already have) and GP records. It is emphatically not, despite some misleading obfuscation, for the use of medical professionals regarding an individual’s clinical care. It is for national planning of healthcare and for ‘research’ purposes.  

Controversies about the scheme include: the reluctant and casual public information method - an unaddressed and uninformative junk leaflet like a pizza flyer which only half the population got (data protection czar the Information Commissioner did not); the fact that it is not an opt-in requiring consent but only an opt-out system – and even that based apparently only on a policy concession rather than a legal right; fears about threats to confidentiality since much of the data will be personally identifiable and might be passed on or sold to insurers, private healthcare providers or the DWP.

Much of the awareness-raising has been done by the media, by NGOs like medConfidentialand Big Brother Watch, and by medical staff like this GPrather than by officialdom. The mass roll-out was paused in favour of pilot areas and the Health Select Committee is doing an inquiry. This was originally just about care.data but they have widened it out to the handling of NHS patient data in general, no doubt because of concern at what they have learned about the arrogantly and incompetently-managed mess.   
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A patient can express an objection from having their data uploaded from their GP (‘type 1 objection’) and/or from having it given/sold by HSCIC to third parties (‘type 2’). I asked an oral questionyesterday on reportednon-respect of 700,000  type 2 objections which the HSCIC has admittedit has not implemented because it ‘does not have the resources or processes to handle such a significant level of objections’ (lack of preparation because the optout facility was forced on it?). It also says that screening programmes could be affected (has it only just discovered this?)

Presumably the non-respect of the optouts means that data on those 700,000 people could be being given out currently to third parties against their express wishes. I found the minister’s answer unsatisfactory though in failing to address the precise focus of my question.

The highly regrettable feature of the care.data fiasco is that it might well affect public trust in data-sharing for legitimate reasons such as high quality medical research and analysis to detect side-effects of drugs. In the context of the proposed update of EU data protection law, the European Parliament advocates explicit consent as a condition of data use, subject (as pushed by me when an MEP) to some flexibility for research. The carelessness of NHS England and the HSCIC could understandably harden attitudes of privacy advocates.