This is welcome.
The care.data system, also called variously the General Patient Extraction Service (GPES) or the Health and Social Care Information Centre, was dreamed up as a money-spinning device by Jeremy Hunt’s Department of Health.
The aim was that, if you were an NHS patient in England, your GP would be forced to provide your confidential records, showing every medical condition you have ever had and providing intimate details of your current state of health, to a huge national database.
From there, your information could be sold on to private healthcare and pharmaceutical companies for “research”. A proposal backed by NHS England (a body set up largely to support the increasing privatisation of the NHS, if my information is correct) would give non-NHS bodies including private companies the right to ask for access to the data.
The government had said the information would be “pseudonymised”, in an attempt to reassure you that you could not be identified from the information to be provided to outside organisations. This proved to be untrue, and in fact it was entirely possible to trace your medical information back to you.
The government claimed the information would help experts assess diseases, examine the effects of new drugs and identify infection outbreaks, while also monitoring the performance of the NHS.
In fact, it seemed far more likely that this was a widespread invasion of privacy, with the information likely to be used (for example) to sell you health insurance that you should not need.
The Department of Health has announced that the care.data programme will be axed following publication of two reviews into how data is used and shared in the NHS.
Two reviews commissioned by the DH were published on Wednesday – the Review of Data Security, Consent and Opt-Outs from national data guardian (NDG) Dame Fiona Caldicott and the Safe data, safe care report from the CQC.
Health minister George Freeman said NHS England had taken the decision to ‘close the care.data programme’ in light of the findings.
But he warned that the NHS must match the pace of modern life and become ‘fully digital’, with GP, pharmacy and hospital records all based on digital platforms.
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