Care.data – does the NHS care?
The NHS has got itself in a hole with the bungled care.data implementation. Proposing that, unless people opt-out, the NHS will take their health care data, make it pseudonymous and then seemingly make it available to all and sundry was asking for trouble.
It can be very easy to identify you from pseudonymised data, especially where more than one identifier is still present: such as where your name and address have been removed or pseudonymised, but your postcode and date of birth remain, and remain linkable to, for example, credit reference data.
care-data.info independent website by Dr Neil Bhatia, a GP and Caldicott Guardian in Hampshire
With sensitive data surely the key issue has to be trust. The arrogant bungled implementation that has been put on hold does not exactly generate trust.
There is across the country a breakdown of trust due to:
- general mendacity of politicians, priests, police and press. Are physicians to be added to this list?
Specifically trust has been eroded by:
- episodes of data loss due to carelessness (Sophos Security reports that we are second only to the US for data breaches)
- episodes of government snooping and data correlating – when they said they were not
- an awareness that the US has a frightening ability to gather information about “aliens” (you and me – and Angela Merkel) and that they may also gather and use this information for commercial reasons (i.e to assist US corporations – that might just be selling drugs to the NHS)
- an awareness that we are getting more cold calls from people who seem to know a lot about us (whether it is our finances, the car-crash we had a few months ago, or other matters)
- a growing awareness of the commercialisation of the NHS and a suspicion of the motives (profit not care) of the private companies already involved
- an acknowledgement that we have a government that believes in a small state and which will therefore outsource anything it can
- a recognition that Government IT does not have a good record – and NHS IT may be even worse.
- a growing understanding of how much we are sacrificing our privacy and how relatively unsophisticated processes can work back from pseudo-anonymous data to identify real individuals.
- an awareness that once “your data” is out, it’s out and there is no way to recover your privacy should the government extend what it wants to do with that data.
I suspect that this government will just keep asking (a bit like the French and Irish at Euro-referenda time) until they get the answer they want.
With a “new” plan to persuade us this summer, will they declare all current opt-outs as “null and void” – “because we were not adequately informed” and expect us to opt-out again?
I don’t trust them.
As to claims that by opting out we are not “playing fair” with medical research and that we should give up this data (and our associated privacy) because we “get the NHS for free”, I disagree profoundly.
First the NHS is not free – we pay heavily for it through our taxes.
Secondly, it should be possible to design a scheme which assists medical research with data that can not be traced back to an individual. Any data that goes outside the (tightly defined) NHS should be fully anonymised. (I also think it should be properly charged for – drug companies do not treat the NHS as a charity, so I do not see why the NHS should treat drug companies as charities.)