Important changes to the privacy of our medical records starting March 2014

Have you noticed a leaflet like the one below coming through your door in the last few weeks? You may well have thrown it away without even reading it. But even if you read it, you might have thought it referred merely to the sharing of GP records with consultants

NHS medical data opt out leaflet

Unfortunately there is much more than this at stake. GP practices across England will soon be required to supply patients’ personal and confidential medical information, on a regular and continuous basis, to the Health and Social Care Information Centre (HSCIC)

Details from your medical record will be extracted from the practice, without your permission, in a form that can identify you, and will include your NHS number, your date of birth, your postcode, gender and ethnicity, all your medical diagnoses, referrals to specialists, prescriptions, family history, blood test and screening test results, body mass index and your smoking and/or drinking habits

This programme of data extraction is called 'care-data'and the information uploaded will be used for so-called 'secondary uses' - i.e. for purposes other than your own direct medical care. Medical staff treating you at your GP surgery, in hospitals, A&E clinics etc. will not have access to this database

Instead the data will be made available to organisations outside of the NHS, such as researchers and commercial organisations

Under the Health and Social Care Act 2012, GP practices have no option but to allow the HSCIC to extract this information. Once the data has been extracted, the GP practice is no longer the data controller for that information, and cannot control or protect in any way how that information is used, shared, or who has access to it

Opting out

However, although GPs cannot object to this information leaving the practice, individual patients and their families can instruct their practice to prohibit the transfer of their data: you have the right to opt out. Opting out will not affect your own care in any way at all, but if you do nothing, it is assumed that you have opted in, and your medical data will be extracted and uploaded to the HSCIC. Once it is there, you will not be able to get it deleted

The data upload is due to start very soon - in March 2014 – so you need to act now if you want to opt out

To opt out go to the website http://medconfidential.org which tells you much more about care-data, and gives you an opt-out letter to download. It includes reference to the two processes your GP needs to opt you out of - uploading your data from the GP practice, and disclosure of your data to others by the HSCIC.

You can also download the letter by clicking here

Back to the campaigns page

Highbury Community Association 2012-2016