NHS care.data - update

Following the accumulated doo-dah hitting the fan, the NHS has now done a back-pedal on plans to start extracting patient data from medical records and has delayed extraction for another 6 months.

Dissent Codes
As it stands, code 9Nu0 stops any data being uploaded.  If data has already been uploaded (either from your GP, or elsewhere in the NHS), code 9Nu4 only stops the HSCIC selling on your (full, easily identifiable) red data.  However, it does not stop them releasing red data to certain research organisations, or using that information in, say, the event of an epidemic.  Code 9Nu4 also does not stop the release of so-called "pseudonymised" or amber data - data which still has your NHS number, postcode, gender and age attached, and which is easily identifiable with by cross-referencing with other data sets, for example the electoral roll.  The only way to stop commercial organisations from getting this information is to prevent the upload of that information in the first place.  If you've informed your GP you want to opt-out, it's worth leaving it a few weeks and then checking that they've actually made the changes as requested.

I'm sure I read somewhere recently that there was talk of changing dissent codes so that 9Nu4 stopped the release of all data, replacing it with the NHS number and a dissent notice (which is, arguable, how an opt-out ought to work.)  However, I cannot find the link to that now so I'm taking it with a pinch of salt, unless someone can provide me with up-to-date info.

Summary Care
If you didn't opt-out of the Summary Care record (allowing different NHS providers - surgeries, hospitals etc. - to share your data between them purely for facilitating your medical care) then now would be a good time.  As far as I can make out, you can have an opt-out code for care.data on your record, but if you've not also got the code for the Summary Care opt-out, your information can be transferred to another provider via Summary Care who may then upload it to HSCIC.

Dissent codes for Summary Care: on the old system, 93C3. or XaKRy; on the new system, 9Ndo. or XaXj6.

Interesting Links
There's a new website set up by volunteers to ease the opt-out process: Fax Your GP

MedConfidential have published the board papers of HSCIC - including the board members' register of interests.  A lot of fat fingers in a lot of juicy pies there, which should come as a surprise to no-one.