ACT NOW to keep your medical records private and confidential.
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 made identifiable by uploading it along 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. These ‘secondary uses’ include patient-level tracking and monitoring, audit, business planning and contract management.
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 provides access to patient data, some in identifiable form, to a range of ‘customers’ including private companies.
So what can I do?
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 may wish to do this directly when you next go for an appointment, or you can send a letter.
We provide a letter that you can fill in and send to your GP in Microsoft Word format and as an Adobe Acrobat PDF. Simply click on one of the links below to download a letter. Print off a copy, fill in your details, sign it and send it to your GP:
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 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:
We will not share your details with anyone else.