Privacy fears spark NHS data row

Insurance companies could inadvertently be the main beneficiaries of a new NHS patient mega-database – dubbed care.data – designed to aid research into diseases after the Government revealed it plans to raise revenue by selling it on to private firms.
Despite fears that the EU’s General Data Protection Regulation will render the database illegal, the Government is pressing ahead with the scheme, due to launch in April.
It will be promoted through a mass door-drop to all UK homes this week, informing the public that their medical histories will be shared with researchers and pharmaceutical companies unless they opt out.
But although the data will be “pseudonymised”, the Government organisation which is running the scheme – the Health & Social Care Information Centre – says anonymity cannot be guaranteed, as insurance companies may be able to match their own data against it to identify patients.
The information will include mental health conditions and diseases such as cancer, as well as smoking and drinking habits but privacy experts have warned there will be no way for the public to work out who has their medical records or to what use their data will be put. The extracted information will contain NHS numbers, date of birth, postcode, ethnicity and gender.
Phil Booth, co-ordinator at patient pressure group medConfidential, said: “One of people’s commonest concerns about their medical records is that they’ll be used for commercial purposes, or mean they are discriminated against by insurers or in the workplace.
“Rather than prevent this, the care.data scheme is deliberately designed so that ‘pseudonymised’ data – information that can be re-identified by anyone who already holds information about you – can be passed on to ‘customers’ of the information centre, with no independent scrutiny and without even notifying patients. It’s a disaster just waiting to happen.”
He added: “Officials would have you believe they’re doing this all for research or improving care but the number of non-medical, non-research uses is ballooning before even the first upload has taken place. And though you won’t read it in their junk mail leaflet, the people in charge now admit the range of potential customers for this giant centralised database of all our medical records is effectively limitless.”