In a nutshell; the medical records sell off explained.
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.
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 actually 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.