Data is beautiful. Data produces information and information produces knowledge. Big Data – using information technology to store and analyze gazillions of data items is awesome and has the potential to make the world a safer, better and more interesting place.
So you would think that I would be a cheer leader for the Government CareData initiative which aims to take the information locked away in GP records, stick them on a large database and open up the anonymized data the scrutiny of researchers and planners. But I’m not.
More observant readers will already have noticed the worrying presence of the words “Government”, “initiative” and “large database” in the same sentence.
If you have received your information leaflet and not thrown it away (because it arrived with all the junk leaflets about takeaways and yoga) you may have missed the reassuring news that your un-anonymized records are going to be handed over to Atos for processing. You will not, however, find out where the information is going to be stored or processed. Or who it is going to be shared with. Or what happens at the end of the contract.
You will also notice that there are no details about exactly what sort of information will be extracted.*
You maybe reassured to know that you can opt out, although there is no opt-out form on the leaflet – just a vague direction to “speak to your GP practice”. If the National Trust wants to pass on my details on to “carefully selected organizations”, I have to explicitly opt-in to protect my privacy. Compare this to the NHS’s “you don’t need to do anything” (except in the highly unlikely event that you are at vaguely concerned about us handing over your personal medical history to a private contractor with a questionable reputation for probity).
Having thought about it, I’m going to opt out (but reserve the right to opt-in at a later date). As far as I know, my GP record doesn’t contain anything of a particularly sensational nature; but to be honest, I don’t know what’s in it. What I do know is that this whole project has an unsavoury smell about it and it’s not the smell of disinfectant – it’s the smell of money.
*If you look very hard, you can find “What information is going to be extracted? – see under “Code set”