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.
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