You should by now 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 for pizza deliveries and cheap sofas and you will probably have thrown it away unread.
THIS IS A SERIOUS MISTAKE.
Because, as 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 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.
Now the first 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. After all, 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?
The answer is, of course, that they really want your information and so they are relying on your apathy as much as a mobile phone provider or an energy company would be.
The second problem I have is are we identifiable through this data? While the leaflet is a little vague, when you check at the parent NHS website they are linking “your date of birth, full postcode, NHS number, and gender.. to link your records in a secure system”.
Date of birth, full postcode, NHS number and gender? Bingo! You could identify me that way, no problem. ( And ‘secure system’? Perlease. Does the name Snowden still mean nothing?)
Don’t get me wrong, theoretically I think NHS data sharing is a good idea. My family suffers from a vile hereditary condition that has been passed down through four or five generations and is set to continue for the forseeable future 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 situation and make life better for future generations. However my third concern is what will be done with our data?
We are told it will be made available to others – such as those planning NHS services and ‘approved researchers’.
- Is this a full list? What are the criteria for approving researchers? (Are they, for example, British researchers working within the NHS? Are they health researchers? Will they be using the research for profit – and will the NHS benefit, or be disadvantaged by this?)
- What if our data were sold to – or indeed, fell into the hands of – researchers from an aggressive multinational pharmaceutical company, who patented the findings?
- What if elements of the media saw this as the next thing after telephone hacking and hacked into such a database to establish – and publish – things that we would prefer to be kept private?
- Or insurance companies found ways to plug into detailed medical histories?
- Indeed, what if organisations started targeting us with health-specific ads?
There are a lot of questions about the use and sale of our personal medical data that are not currently being answered. I am a little worried that the government might not even have thought of some of them.
NHS data sharing? I share mine with my excellent GP practice, with various hospitals and with various expert medical personnel. But until I get assurance as to its future use on points such as those above, I will not be sharing it with the state!