Everyone in Suffolk should have received a leaflet through the post (click here) about how the government intends to share your personal health data with a variety of ‘approved’ (but unspecified) organisations and ‘researchers’. The leaflet came without an envelope and will probably have arrived with a lot of other leaflets and many people may have thrown it away unread.
The leaflet tells you, “If you are happy for your information to be shared “ (or if you have thrown away the leaflet unread) “you do not need to do anything. There is no form to ﬁll in and nothing to sign.”
In other words – you will automatically have opted into having your full medical information shared with whoever the government decides appropriate.
Or indeed, anyone who breaks into the HSCIC ‘secure’ system.
“The thing that worries me, is why is there no form to fill in and nothing to sign? The government are leafleting every household in the country,and the form could easily have contained a simple opt-in slip that you could fill in and take to your GP. Almost everything in this country that’s not compulsory requires an opt in – from electoral registration, to becoming an organ donor. If the government wants to start a trend for opting-out rather than opting-in why don’t we start with one or both of these? ” asks Woodbridge County Councillor Caroline Page.
“The second problem I have is can we be identified via this data? The leaflet tells you that your name will not be linked to your data but the parent NHS website confirms that they are linking “your date of birth, full postcode, NHS number, and gender“ will be. That is enough to identify most people.
Theoretically NHS data sharing is a good idea. Nothing would please me – and people like me – more than if a responsible state used our medical data for responsible research to ameliorate our current problems and make life better for the future. But until we can have better guarantees as to anonymity and security this initiative seems to be fatally flawed.
Personally, I’m happy to share my NHS data with my excellent GP practice, with hospitals and with various expert medical personnel. But until we can have better guarantees as to anonymity and security I will not be sharing my data with the state!”
A proposal – which will be discussed next month – could additionally give access to our data to non-NHS bodies, including private firms. Make a positive decision as to whether you are opting in or out. Contact your GP surgery