A grand breach of confidentiality
As the furore over care records escalates, Dr Paul Thornton says the threat to patient confidentiality is much wider than realised
As a parting shot just before Christmas, then health minister Lord Warner announced unequivocally that patients would be able to keep their information off the national database being created by Connecting for Health. This was trumpeted as a substantial concession – nearly two years after the Department of Health's patient tsar Harry Cayton reassured viewers on BBC news that patients would 'be able to opt out of the national database entirely if they choose'.
Despite the gestation period of an elephant, the Care Records Development Board, which Mr Cayton chairs, has failed to inform patients of that choice and how it can be exercised. Nor has the board given any indication of how the care of such patients might be taken forward if they are ever allowed to exercise such choice.The reality is that the Department of Health intends everyone to have their information recorded on the national database. The ministerial task force report is explicit. Neither an opt-in nor even a true opt-out is intended. This is despite the task force including senior representatives of the BMA and RCGP – both of which organisations had previously demanded an informed opt-in from every patient before information was placed on the database.It is now clear that Lord Warner's 'opt-out' is limited to Summary Care Records. Connecting for Health intends that all clinical, psychological and social information will be recorded in Detailed Care Records. Connecting for Health documents confirm these records will be accessible by staff who work in the same NHS unit as the professional to whom private information has been divulged. This may be as small as a single GP practice or as large as an NHS trust covering two or three district general hospitals. Detailed Care Records may become even more widely accessible.In addition, information recorded in Detailed Care Records will be transferred to the 'secondary users service' (SUS), an unpublicised and unconsented national back-office database that will store and release identifiable patient information for managers, researchers, auditors, finance officers and more widely as they deem lawful. In the absence of any new safeguard, it is inevitable that police powers will come to be applied to search SUS. Information from Choose and Book and from the electronic transfer of prescriptions will also be transferred to the SUS.At the planning stages of the project, Connecting for Health reassured sceptics that patient information would be protected from widespread inappropriate sharing because software would be used to hide sensitive information that patients did not want revealed, even to other health professionals. The proposals were metaphorically dubbed 'sealed envelopes'.
The sealed envelope software is not yet written or tested, and will not be available until long after the database is up and running. The software will not protect information that is stored in scanned images of historical documents and patient instructions can be overridden. Sealed envelopes will be ignored in respect of information transferred to the SUS.
The legal, ethical and political justifications that forced the Summary Care Record opt-out apply equally robustly to these further aspects of the national database proposals. An opt-out from the Summary Care Record is not sufficient to meet the professional, ethical and legal obligations on health workers to whom confidential sensitive information is entrusted, particularly in respect of the '93C3' mandate, which has already been sent by thousands of patients to their GPs. Lord Warner's successor as health minister is Lord Hunt. Having been a health minister previously, Lord Hunt introduced legislation to allow confidential patient information to be divulged without consent. However, he included safeguards to counter allegations from patient and professional bodies that the powers being sought by Government were excessive. The CfH proposals are now incompatible with the assurances that he gave to parliament at that time. Will he ensure the safeguards are respected?
Dr Paul Thornton is a GP in Warwickshire• How concerned are you that electronic care records will threaten confidentiality? Email firstname.lastname@example.org