OPT OUT of care.data programme automatically collecting patient health records

The Daily Telegraph article referenced by Tom Gray’s posting does indeed express concerns here in Europe about the impact that Snowden’s revelations might have on the collection of data from medical records.  However, if you read the comments that have been attached to the article you will see that in England at least there is considerable concern *about* the NHS’s “care.data” programme for automatically collecting patient health records from their doctor’s surgery. These concerns I believe are pre-Snowden in origin, and centre on the fact that the data will be collected for each patient *unless* he/she opts out, and that much of the data will be at best “pseudonomised”.
One of the leaders of the campaign against care.data is Dr Neil Bhatia (in British English a “General Practitioner” or GP, i.e a family doctor) – his website is
at: http://www.care-data.info
Quoting Dr Bhatia:  care.data is going to begin very soon, and it will affect every man, woman and child in England and their confidential medical records.  All households in England will shortly receive a junk mail leaflet through their letterbox about this programme, entitled  “Better information means better care” .  This leaflet is not about sharing your medical information with doctors, nurses and other health professionals outside of your GP surgery.  It’s not about the ways in which your GP shares information about you as part of providing essential medical care.
It’s not about ensuring that hospital specialists have the information that they need when you are referred to see them.
And it’s not about submitting information so that GP surgeries and hospitals are paid appropriately for the care that they provide.  This leaflet is about care.data .  Not that you’d know, since “care.data” is never mentioned in the leaflet.  The HSCIC and NHS England are not asking for your permission to extract and upload your data – they’re forcibly taking your information.  Your information is not going to “the NHS” – it’s going to a single organisation, the HSCIC.
They alone determine what happens to it next – not you.
There is no consent with care.data – the decision has been made for you, and your GP surgery, by the HSCIC.
All you have is the right to object and reverse the decision affecting your medical information.
You have to act if you wish to preserve your confidentiality. Unless you do, care.data will go ahead and involve your GP records by default. > > And you have to act fast, because once your data is uploaded you can never get it removed from the HSCIC databases.
This website aims to provide information to everyone about care.data so that you can make an informed decision about opting out or not.
If you do decide to opt-out, this site will tell you how to do so and the opt-out options that you have.
This website provides facts, not opinion. It’s for you to decide whether to opt-out or not. This site will tell you what will be happening to your medical information and what control you have over the data flows to and from the HSCIC databases.  . . . .
care.data is not anonymous
• Sensitive and identifiable information is going be extracted from your GP records and uploaded to Health and Social Care Information Centre (HSCIC) databases
• Sensitive and identifiable information has already been extracted, and will continue to be extracted from your hospital records and uploaded to HSCIC databases
• You will not be asked for your explicit permission or consent before these extractions take place
• The two sets of your information will be combined into one database and subsequently released, in various formats, to organisations within and outside of the NHS, for the purposes of administration, healthcare planning and research
• The HSCIC charges for releasing information to organisations, especially identifiable information
It sells data
• The information is not going to be available to doctors and nurses, and so will not be used to provide direct medical care
• The HSCIC will keep your uploaded information indefinitely – it will never be deleted, but continuously added to
• You cannot prevent the HSCIC from releasing information uploaded about you in anonymised or potentially identifiable formats
• You cannot control when, to whom, for what purposes, and what specific information the HSCIC releases about you from your care.data record <snip>
I and my family have managed to opt out.
Brian Randell