Care.data scheme in chaos as government signals new legislation
Whether or not you have asked your GP to opt you out of the government’s scheme to provide your confidential medical records now held at local surgeries to researchers and others, or whether you intend to do so soon, the care.data scheme has been pronounced as being in chaos by one of its firm supporters.
Just over a week ago, physician, academic and science writer Dr Ben Goldacre wrote in praise of care.data (generally spoken as care-dot-data.) At the weekend he was embarrassed, he said, to have to write that the scheme was a mess in need of new primary legislation to ensure it is secure and will not sell information to commercial buyers.
At briefings on Friday evening it was revealed that Health Secretary Jeremy Hunt would announce this week that he will legislate on care.data, but as an add-on to the Care Bill that is currently before Parliament. He will have to hurry as the Bill starts its report stage in the Commons next Monday (March 10.)
However the briefings seemed to come up very short on what critics want. Hunt said he would prevent data – even when made anonymous – being sold to insurance companies.
But the words used were that data will only be released when there is a “clear health benefit” rather than for “purely commercial” use by insurers and other companies.
This seems to be an empty promise as health insurance companies – like BUPA and the American health insurance companies the government is keen to get involved in the NHS – could easily argue that they needed the data to provide ‘clear health benefits’ for their subscribers.
The Health Service Journal’s version of the Friday briefing was that NHS England was even considering a total u-turn and making the scheme one that patients could opt in to rather than opt out of. As one comment on the HSJ site said: “If the default is ‘opt out’ then care.data is dead.”
The care.data shambles is fast becoming a major test of whether the NHS is safe in the hands of the coalition government. Part of the problem is that having talked up the benefits and absolute safety of the scheme, the government has been caught out by the revelation of a recent sale of confidential data to the insurance industry.
No sooner had care.data been put on hold for six months to give the government time to explain the benefits and safeguards to the public, than it was revealed that data for 47 million hospital patients had been sold to a group of insurers.
Some hours later, the head of care.data refused to tell MPs about this sale because his organisation was too new. However, it has been pointed out that the insurance industry’s report using the purchased data carried the logo of his new organisation. He has further explaining to do.
And as though ministers had not enough problems, the chairman of the British Medical Association’s GPs committee has said doctors – who have the task of uploading the records from their surgeries to the central data bank – will have to be indemnified against potential legal action from patients who believe their records have been wrongly used.
That surely shows how little faith there is that our records will not be misused or will not be leaked or hacked.