MP makes formal complaint to ICO over care.data patient records "grab"

By Graeme Burton
05 Feb 2014 View Comments
nurse

Birmingham MP Roger Godsiff has registered a formal complaint with the Information Commissioner's Office (ICO) over the care.data public information campaign, claiming that too little has been done to inform people about how their patient record information will be used.

Care.data is an initiative run by the NHS's Health and Social Care Information Centre (HSCIC) to take patient record data from GP surgeries to be sold to pharmaceutical and other companies for research. The HSCIC says that the data will be "pseudonymised", but campaigners claim that identities can nevertheless be easily ascertained.

Further reading

Godsiff lodged the complaint with the Information Commissioner citing low levels of awareness among GP's and the general public.

"I don't believe in all honesty that NHS England can proceed with the upload of confidential patient medical next month when the evidence is growing daily that people don't know what's going on. Added to which, it's not as if people are being asked to sign up for something, the something - your personal medical files - will be taken anyway unless you have opted out," said Godsiff.

He added: "The conduct of this campaign has been shambolic and cut price, with NHS England not even according individuals the dignity of an individually addressed communication which might stand some chance of reaching them instead of dropping on the doorstep with other leaflets for furniture sales and pizza delivery.

"NHS England have also comprehensively chosen to ignore the concerns of care groups who represent those with learning difficulties, the elderly and frail and so on who are not likely to be in any position to discuss the matter with their GP."

Godsiff claims that NHS England has not demonstrated "due diligence" in getting its message out to the general public, who will be signed up for care.data if they do not opt out.

The HSCIC, he adds, is "in no position to ‘presume consent' on behalf of large swathes of the GP-using public to particularly sensitive data".

Godsiff, who has taken a close interest in the development of the care.data database and campaigned against it in the House of Commons, has already written to the Speaker's Office in the House of Commons requesting time for a parliamentary debate. He believes that the care.data programme should be halted immediately - especially after the many revelations of GCHQ spying uncovered by whistleblower Edward Snowden.

"Now more than ever I am deeply suspicious of people or organisations that want to take something personal, particularly when I am told it's for my own good and that it will remain confidential. The care.data campaign has not set out to seek consent, either effectively or comprehensively, and as a consequence carries no legitimacy or trust. It is a care.data grab," said Godsiff.

Reader comments
blog comments powered by Disqus
Newsletters
Is it time to open Windows?

Computing believes that Microsoft will start offering Windows free of charge by 2017. Is this a good thing for the enterprise?

53 %
21 %
5 %
15 %
6 %