Opting Out of your Personal National Health Data Becoming a Tool of the NWO Social Services Database*
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.
[Bringing you in line with the U.S system that records every detail about who you are, and your preferences used for social engineering], 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.
As of January 2014, NHS England is sending out a leaflet entitled Better information means better care (2MB PDF) via junk mail. It is not addressed directly to you as a patient and it deliberately doesn’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 appointments.
So what can I do?
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.
Dr Neil Bhatia, a Hampshire GP, has written a leaflet with a tear-off form that you can use for yourself, your children and anyone for whom you hold enduring power of attorney:
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.
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 – http://www.medconfidential.org/how-to-opt-out – or share it on social media. You might even print off copies of the form (it 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: http://www.care-data.info/
*UPDATED* Opt out letter (PDF)
*UPDATED* Opt out letter (MS Word)
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 it is not clear that the second code is fully operational. The changes across the NHS are ongoing, so to stay informed you may wish to: