The only clinical information on the national health service care record spine is in summary care records. Up to 30 April 2008, 614,052 registered patients over the age of 16 in the summary care record early-adopter primary care trust (PCT) areas had been sent a personalised information pack to inform them of the changes that are taking place, the choices that they have and how those choices can be exercised. Of these, 4,986 (0.81 per cent.) have indicated to their general practitioner or to the PCT their wish not to have a summary care record.
The Secondary Uses Service (SUS) database is the repository of person and care event data relating to the treatment of patients in the national health service. It is used for management and clinical quality and safety purposes other than direct patient care. These secondary uses include healthcare planning, commissioning, public health, clinical audit, benchmarking, performance improvement, research and clinical governance.
Information provided through SUS will be anonymised or pseudonymised to remove information that could be used to identify individuals but still allow cases to be tracked and linked, for example for research. Patients do not have an automatic right not to have information about them held within SUS. We safeguard the confidentiality of information about patients, while also supporting and facilitating the use of information for the purposes for which SUS exists, subject to safeguards.
Although patients have no automatic right, the Data Protection Act 1998 provides a right to have requests to stop information being held within SUS considered, subject to being able to demonstrate that processing is causing the patient significant damage or distress.