You’ve probably had a leaflet from the NHS through your door in the last few weeks titled ‘Better information means better care’. It’s about a scheme called care.data, although its never mentioned by this name. Under this scheme a government agency, the HSCIC, will be first of all collecting all primary care data (patient records) and compiling them in a huge database, and then selling access to this database. Currently all patient records are confidential and do not leave your doctor’s office, so this is a big change.
The changes are worrying for two main reasons. First, there is the obvious issue of privacy – it will be very possible to identify individuals from this database. Second, there is the concern over the creeping privatisation of the NHS – this information will be bought and used by private healthcare corporations to advance their business at the expense of the free nationalised health service.
First, the privacy issue. There will be three levels of anonymisation of the data:
“Red” – Clearly personal identifiable data – This will be uploaded to the central database (unless you object) but will not be up for sale in the first version of care.data. However, it will be available to be sold at some point in the future to “approved” researchers.
“Amber” – Pseudonymized or potentially identifiable – Your name will be stripped from the data, but your DOB, postcode and entire medical history will be there, so it is likely that someone would be able to reconstruct the stripped data by cross-referencing with other datasets, eg the census or the electoral register. There is no external oversight over who the HSCIC sells this data to.
“Green” – Anonymised – This is aggregated data, which means that it would be impossible or very difficult to identify individuals. It can be sold at any time, at any price, to anyone, to be decided by HSCIC.
Government agencies have shown time and time again that when they collate data they also end up losing it. There is also a worrying lack of oversight on who the data will be sold to and where it might end up.
This leads us to the other main issue. This scheme is part of a wider picture of piecemeal monetisation and privatisation of the NHS. Successive governments since Thatcher have been eyeing up the assets of the NHS, a truly huge and immensely valuable organisation, and coming up with ideas on how to strip assets to sell off to make short term economic gains. This data is a core asset of the NHS, coming as it does from years of work with people all over the country – its a unique resource, and selling it to the competitors of the NHS (private healthcare providers like Virgin or Serco) will allow those competitors to market themselves more effectively. Its part of a wider Tory desire to see free markets triumph despite the fact that in this case they will be triumphing over a unique organisation which we own and which still provides free care at the point of delivery. The NHS is an institution which previous generations fought for and which we should be proud of and we should defend.
So, what can you do? You can opt out of this scheme – all you have to do is let your GP know, by writing, that you do not wish for your records to be shared, or else send them an opt-out form. Go to the link at the end of this article to download an opt-out form.