*BREAKING NEWS, 7 Feb 2014*

UPDATE 12/2/14: We are awaiting official clarification from DH and HSCIC, expected soon.
UPDATE 14/2/14: We are still waiting to see how long it takes for DH to confirm whether NHS England has been caught misleading the public

GP magazine Pulse reported on 7/2/14, "Patients who have opted out of the scheme will still have their records sent to the HSCIC stripped of identifiers" (see 4th paragraph from bottom of this article). This confirms something buried on page 9 of NHS England's recently-published care.data Privacy Impact Assessment [PDF] (UPDATE 12/2/14: there appeares to be a problem with the official link to the PIA, so here is a copy), which states:

Where patients have objected to the flow of their personal confidential data from the generalpractice record, the HSCIC will receive clinical data without any identifiers attached (i.e. anonymised data).

i.e. the intention is to still to extract information from the medical records of people who had opted out, just not with their NHS number, postcode, date of birth and gender attached.

This is not what any reasonable person would understand by opt out - if you opt out, noinformation from your medical record should leave your GP practice. We are working hard to resolve this and will let you know as soon as we can what is going on. If you want to be kept informed when something happens, please:

If you haven't done so already, our advice continues to be to opt out now. The codes applied to your medical record are the only mechanism by which your information can be blocked from extraction. Our job now is simple: we have to make NHS England and HSCIC make the codes work the way they should and and do what millions of us have been told they would do.

As well as opting out, you may want to write to your MP about this.

While you are composing your thoughts, you might also want to watch this short film, 'Keep My Secrets' that we think NHS England could learn from.

Opt out form

In January 2014, NHS England sent out a leaflet entitled Better information means better care(2MB PDF) via junk mail. It was not addressed directly to you as a patient and it deliberately didn't include an opt-out form. The leaflet says you should "speak to your GP practice" if you want to opt out. This is misleading and could waste your time and potentially waste valuable GP appointment time as well.

All you need do is write a letter or download a simple form (link below) instructing your doctor to opt you out, which you can fill in and post or drop into your surgery reception for their attention.

If you have any problems getiing your surgery to understand what you are opting out of or if they hand you an opt out form for something else, e.g. the Summary Care Record, then let us know using our handy formFix tool - you tell us, and we'll send them some details.

Dr Neil Bhatia, a Hampshire GP, has written the text of a leaflet with a tear-off form that you can use for yourself, your children and anyone for whom you hold enduringpower of attorney:

Opt out form (PDF)

Please do take a few moments to e-mail this PDF to your family, friends and colleagues, or send them the link to this page - www.medconfidential.org/how-to-opt-out - or share it onsocial media. You might even print off copies of the form (which conveniently prints double-sided and folds to fit in a DL envelope) to give to others who may not have heard about what's going to happen to their medical records, and won't know what they can do.

Dr Bhatia also provides more information on the care.data scheme on his website:www.care-data.info

What's happening?

Under changes to legislation, your GP can now be required to upload personal and identifiable information from the medical record of every patient in England to central servers at the Health and Social Care Information Centre. Once this information leaves your GP practice, your doctor will no longer be in control of what data is passed on or to whom.

This information will include diagnoses, investigations, treatments and referrals as well as other things you may have shared with your doctor including your weight, alcohol consumption, smoking and family history. Each piece of information will be identifiable as it will be uploaded with your NHS number, date of birth, post code, gender and ethnicity.

NHS England - the body now in charge of commissioning primary care services across England - will manage and use the information extracted by the Health and Social Care Information Centre for a range of purposes, none of which are to do with your direct medical care. Though the official leaflets talk a great deal about research, these 'secondary uses' for which your data may be used include patient-level tracking and monitoring, audit, business planning and contract management.

In September 2013, NHS England applied to pass on your information in a form it admits "could be considered identifiable if published" to a whole range of organisations that include - but are not limited to - research bodies, universities, think tanks, "information intermediaries", charities and private companies.

Though you may be told that any data passed on will be 'anonymised', no guarantees can be given as to future re-identification - indeed information is to be treated so that it can be linked to other data at patient level - and NHS England has already been given legal exemptions to pass identifiable data across a range of regional processing centres, local area teams and commissioning bodies that came into force on April 1st 2013. The Health and Social Care Information Centre already provides access to patient data, some in identifiable form, to a range of 'customers' outside the NHS, including private companies.

So what can I do?

ACT NOW! If you do not want confidential, identifiable information from your medical records to be uploaded and passed on for purposes other than your medical care you can opt out by telling your doctor. You don't have to book an appointment to do this, you can simply send a letter.

As an alternative to the form above, we provide a letter in Microsoft Word (.doc) format, editable Rich Text (.rtf) format and as an Adobe Acrobat (.pdf) PDF for you to fill in and send to your doctor. We have updated this letter so that you can use it to opt out your children or adults for whom you are legally responsible as well.

Simply click on one of the links below to download and print off a copy, fill in your details and the details of anyone else you are opting out, sign it and send it to your GP:

Opt out letter (PDF)

Opt out letter (MS Word)

Opt out letter (Rich Text)

Opting out will not affect the care you receive and you can change your mind at any point and opt back in if you like. Opting out will not prevent your GP from being paid for care provided - information needed for those payments should only leave the practice in summary (i.e. anonymous) form.

If you have any specific concerns, we recommend you speak with your GP.

As you will see from the letter, there are TWO codes that your doctor will need to add to your record - one to prevent identifiable information being uploaded from the GP practice and one to stop the Health and Social Care Information Centre from passing on any identifiable data it gathers from any other care context, e.g. hospital records or clinics.

At this point the codes do not appear to work as patients have understood. We are working to sort this out. UPDATE 12/2/14: We are awaiting official clarification from DH and HSCIC, expected soon. To keep informed, please: