If this logo is not familiar or at least recognisable, then you have probably not seen the leaflet which the Government commissioned to tell us about their data sharing scheme known as Care.Data. Further details on the scheme can be found on this NHS website including the option to download the leaflet that you should have received. For the record our household has not received a copy so far. That said we didn’t get the leaflet about the Police and Crime Commissioner two years ago either. One of the big differences between the PCC elections and the NHS Care.Data scheme is that people like me were doing our best to get elected, even if we had some reservations about the role or the method of informing people. Based on the comments in the media today and yesterdays broadcasts including the interview on Newsnight with Clare Gerada, previous Chair of the Royal College of GPs it is not at all clear who is publicly articulating the case for this change apart from the NHS website and a one or two senior NHS Civil Servants.

I should state my own views here as in principle I believe that securely held anonymised data on health as well as many other issues can be very helpful, if not vital to ensure that public money is spent in the most effective way. However whilst my own health history is reasonably short and bland, I would not want my data to get into the hands of anyone who could put that to commercial use, perhaps cold calling my house with products that they feel will resolve my health needs. My own ideas will inevitably betray a significant level of ignorance on this subject. However a few weeks ago one of the occasional readers of my blog wrote to me to ask why I had not written about Care.Data and I had to confess I knew very little about it. I offered to let him do a guest post on my blog but he has so far not taken up the opportunity. However his comments here explain some of his views.

“They say it is all in a good cause for medical research and that your personal data will be ‘anonymised’. However, as an IT consultant I know that there is no such thing as truly anonymised data. Utilising ‘Big Data’ techniques, running known data sets against anonymised data sets it is possible to know all the details about the people in the anonymised data set. Experts reckon it would take approximately two hours to know whom everyone is in the care.data database – Information, once freed, cannot be made confidential again. are not a good, or trusted, combination. We can write to our doctor’s surgery and ‘opt out’, which I have done. Their intention is to still extract information from the medical records of those people who have opted out ! I find this outrageous. I am not being consulted. I am not being notified. I am being personally abused by a British Government who is supposed to be serving me and the other people of this country … the people they, supposedly, represent. I have now written to my MP and I would suggest you, and everyone else, do the same to stop this abuse of Government power, this undemocratic abuse of our personal medical records and of our right to privacy.”

This information does not appear to have been understood by the people who in theory should know best. A quick search on the internet found this advice from the website of a GP in the NorthWest “This programme is called Care.Data. It is very important that all our patients understand what is happening to their personal data under this scheme and that they have a right to object and to stop their data being included in the programme.…….If you have read and understood what is going to happen to your data and you decide that you do want to prevent your data being processed in this way then please complete the declaration form and send it to the Practice at the following address.”

If the opt process out will not prevent our records from being collected, but simply remove some of the  more evident identifying data and the capacity of data mining systems are as strong as my contact suggests, we do seem to need to know more, or perhaps have much stronger safeguards from the way in which this data can be sold on. We are told that “the Government is planning on selling this data to whomever pays; medical researchers, healthcare planners and insurance companies to name a few.” It is far from clear in what form this sold data will take. Clearly the more raw the data, the more valuable it will be and we know that the last two Governments have been very open to introducing market forces into the sanctuary of public services. One of the questions I have is if the opting out is not absolute, why not anonymise all of the data and save the cost of 26 Million leaflets and the process for opting out. Another is where do the un-delivered leaflets for these national changes end up?

Here in Sussex we have 16 MPs. 15 are members of coalition parties. As yet I have not heard any of them articulating a view about Care.Data. Perhaps they could begin to communicate their ideas? After all there is barely a year to go until most of them seek re-election and if this scheme is being delayed by 6 months, the issue may well become political! We are also being told that charities support this. Perhaps they could let us know what they think before we are so close to the election that the lobbying bill will prevent them from speaking up!