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.
Sunday 23 February 2014
Monday 17 February 2014
Annoyed now - care.data
Twitter, j'accuse. Also, I appear to have lost a morning to this, and it's left me with a headache and now an anxiety attack. I need to get out and walk, but will post this first, so my annoyance and headache will not have been in vain.
There is a plan ("care.data") to transfer medical records in their entirity from GP surgeries to a central repository called the Health and Social Care Information Centre (HSCIC). Once your data is there, they can sell it off; not just "green" truly anonymised data, but also "red" (directly identifiable) and "amber" (easily identifiable with cross-referencing) data as well. Once your data is at the HSCIC, you have no say in how it is used, and no way to delete it out of their databases. You also have no say in how third parties use that data once they have access to it.
To opt out, you need to specify that two codes be added to your medical records. This should prevent amber and red data being extracted. (The HSCIC always has access to green data.) You don't need to make an appointment with the GP for this, just submit the request via letter to your GP. Do it soon - the mass extraction is going to begin shortly, though I haven't seen a definite date quoted anywhere.
Also: don't expect anyone at your GP surgery to know about this. Don't let them confuse it with the opt out for Summary Care records (sharing your records with other care providers like hospitals). This is about opting out of secondary use of your data. That's why it's important to give them the actual codes they need to add.
More information
A GP's take on the plans: http://www.care-data.info
Information on how to opt out, including a pro forma letter with the relevant database codes:
http://medconfidential.org/how-to-opt-out
The Information Commissioner's Office has information on how to submit a "subject access request" - this is a request to an organisation about the data they hold on you, under the terms of the Data Protection Act. They can charge you for the information, and some medical information is exempt from the act anyway, but it should be a way to check what information HSCIC hold on you.
http://ico.org.uk/for_the_public/personal_information
Petitions
There have been a couple of petitions started against the sell-off of people's medical records in this way:
SumOfUs petition: http://action.sumofus.org/a/nhs-patient-corporations
Government e-petiton: http://epetitions.direct.gov.uk/petitions/53994
The latter is more important - the government are legally obliged to respond if enough people sign - but it could use some promotion.
There is a plan ("care.data") to transfer medical records in their entirity from GP surgeries to a central repository called the Health and Social Care Information Centre (HSCIC). Once your data is there, they can sell it off; not just "green" truly anonymised data, but also "red" (directly identifiable) and "amber" (easily identifiable with cross-referencing) data as well. Once your data is at the HSCIC, you have no say in how it is used, and no way to delete it out of their databases. You also have no say in how third parties use that data once they have access to it.
To opt out, you need to specify that two codes be added to your medical records. This should prevent amber and red data being extracted. (The HSCIC always has access to green data.) You don't need to make an appointment with the GP for this, just submit the request via letter to your GP. Do it soon - the mass extraction is going to begin shortly, though I haven't seen a definite date quoted anywhere.
Also: don't expect anyone at your GP surgery to know about this. Don't let them confuse it with the opt out for Summary Care records (sharing your records with other care providers like hospitals). This is about opting out of secondary use of your data. That's why it's important to give them the actual codes they need to add.
More information
A GP's take on the plans: http://www.care-data.info
Information on how to opt out, including a pro forma letter with the relevant database codes:
http://medconfidential.org/how-to-opt-out
The Information Commissioner's Office has information on how to submit a "subject access request" - this is a request to an organisation about the data they hold on you, under the terms of the Data Protection Act. They can charge you for the information, and some medical information is exempt from the act anyway, but it should be a way to check what information HSCIC hold on you.
http://ico.org.uk/for_the_public/personal_information
Petitions
There have been a couple of petitions started against the sell-off of people's medical records in this way:
SumOfUs petition: http://action.sumofus.org/a/nhs-patient-corporations
Government e-petiton: http://epetitions.direct.gov.uk/petitions/53994
The latter is more important - the government are legally obliged to respond if enough people sign - but it could use some promotion.
Sunday 16 February 2014
All about the game
Note: this was sat in my drafts from 16th February 2014; published 27th August 2015.
Some of the thinking has been partially eclipsed by new info I've come across or - discovered? - regarding reality processing (for want of a better term) and systems of aesthetics, but that'll be for a later post.
Some of the thinking has been partially eclipsed by new info I've come across or - discovered? - regarding reality processing (for want of a better term) and systems of aesthetics, but that'll be for a later post.
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