care.data is the name of NHS England’s programme to extract information from GP surgery systems and from health and social care providers, and to link it all together. It is a massive undertaking. At the moment we are concentrating on the first stage of this programme – collecting patient data from GPs – but ultimately all health and social care will be drawn into the system. Hospitals have been told to be ready by 2014; social care will join in by 2015. We’ll talk about that later on.

The first care.data request has now been agreed. This is a set of coded instructions that tells each GP system what information should be uploaded. The full specification for the first upload of care.data can be seen in Appendix A (p.22) of this document.

Here’s how it works:

• NHS England applies to the HSCIC to have the information (care.data) extracted from GP systems.
• HSCIC puts the application through the ‘customer’ procedure that we will outline in blog #8. It then actions the request and instructs GPES  to go ahead and take the information from each surgery system
• The collected data is passed on to a regional Data Management and Integration Centre (DMIC) which sends it to a number of places – like a giant traffic-direction system.

For now, we’re going to focus on just one of these traffic flows: the data that goes back to the HSCIC.

The information is stored on the HSCIC system, still in identifiable form – ie with NHS number, date of birth and the other identifying details attached to the diagnoses and treatments. It is used to create regular reports but ‘customers’ can also request linked data. In the words of the HSCIC  this ‘often contains patient level information‘ and ‘When stringent Information Governance controls allow‘ they can ‘provide extracts of linked data sets in an identifiable form’.

Tomorrow we will look at those ‘stringent’ controls in more detail.