I have written a letter to Stephen Dorrell, the chair of the Health Committee, to point out how officials appear to have misled his committee when they gave evidence there on Tuesday.
It is very welcome that the Health Secretary, Jeremy Hunt, announced he will change the law to ban the sale of our medical records collected via HES and care.data. He acted after it became clear that although officials told the Health Committee that our records collected via care.data could not legally be sold, records collected via a different system (HES) already had been. But that is not all.
Officials also said our records would not be sold abroad, and that only coded data would be extracted rather than free text entered by GPs during consultations. Yet our records were offered for sale in the USA; the Department signed a memorandum of understanding with the USA on data sharing; and CPRD (a system operated by MHRA, the regulator) has been supplying free text for mining.
I also sent Mr Dorrell a previously unpublished briefing I wrote for the European Commission last year on the potential harm that can follow if patients lose confidence in confidentiality. Evidence from the USA and elsewhere suggests strongly that tens of thousands of people would seek treatment late, or not at all.