The government is preparing to resume its GP patient data-sharing plan, even though its chief scientific advisor admits it can’t guarantee your privacy. The care.data initiative was put on hold in February – but it will shortly resume with two exciting new Orwellian additions to our vocabulary.
In theory the GP data is anonymised, but in practice, an individual’s identity can be reconstructed without too much difficulty. In addition, the data is open to all (for a peppercorn fee - PDF). The care.data dissemination programme was put on hold for six months while a "consultation" took place.
The Department of Health has simply ordered an extra layer of administration: and ordered the establishment of “accredited safe havens”, or ASHs, for the data. The plan was published in June (PDF) and last week the NHS announced four large trial areas, covering 1.7 million patients. Nothing has changed except the language: patients will still need to opt out. No extra safeguards have been added to make a "safe haven" safe, apart from the addition of the words “safe” and “haven”.
But that was always the intention – as NHS England freely admits. Care.data was never put on hold for a serious examination – the delay was “an extension to the proposed roll out of the care.data programme, until the autumn, to raise awareness, listen and act on the views of patients and key stakeholders, and to discuss both the benefits and risks involved,” in NHS England’s own words.
Sir Mark Walport, the Government’s chief scientific advisor (his team tweets for him, always in the third person, under the modest handle @uksciencechief) has said opponents of the data-sharing plan are inhibiting the fight against cancer.
It’s a variation of “think of the children” – “think of the tumours”, and it's just as emotive. Walport was merely echoing the architect of the free-for-all, Tim Kelsey, who reassured us that "no one who uses a public service should be allowed to opt out of sharing their records. Nor can people rely on their record being anonymised."
It isn’t researchers who want the GP data as much as it is the insurance companies. The NHS struck commercial “data sharing” deals with insurers and the deals don’t expire until 2015 and 2016. They expect to get that data.
It’s just a pity that the acronym ASH was chosen, the place where you privacy goes up in smoke. But there's a silver lining to this cloud: surely this could be the start of great things?
These could be extended to encompass Secure Limited Access Safe Havens for British Users Registered Nationally (SLASH&BURN), which could be administered by a Certified Lifetime Opendata Technicians, or CLOTs. There’s no shortage of CLOTS in the Open Data movement, which has surely now served its purpose. ®
You can find out lots more detail at the care.data advisory group's consultation pages here.