Patients will be allowed to delete their record of treatment from the new national database, in an abrupt about turn by health service officials.
Following discussions with the Information Commissioner's Office (ICO), Connecting for Health, the agency in charge of the NHS National Programme for IT, has given patients the right to delete their summary care record (SCR) as long as it has not been used.
The decision is a significant reversal of policy on data protection. Previously the agency had resisted pressure from privacy campaigners and doctors to consider the security risks generated by confidential records being transmitted across the NHS broadband computer network, known as the Spine.
Connecting for Health cited the "prohibitive" cost to deleting care records, and, instead, the Department of Health had offered instead to "mask" unwanted files, a process that would leave personal details on the database.
However, the decision does come with the caveat that a patient's SCR file would not be deleted if it had already been used, in which case it would be archived for "medico-legal" reasons.
"Our early adopter programme was set up precisely so we can learn from emerging issues such as this one," said a spokesperson from the Department of Health, in a statement.
"Following discussions with the Information Commissioner (pictured) we have agreed that anyone can now request that their record is deleted. In the event that a record was accessed as part of someone’s healthcare, a record of that access needs to be kept in case there was a subsequent investigation of the performance of a clinician or a dispute about the facts – this is in the best interests of both patients and clinicians."
Connecting for Health (CfH) has always allowed patients to opt out of the national database during the initial stage, before a SCR had been created. But reports emerged in March that, in practice, hospital trusts were making it difficult for patients to exercise that right. During early adopter trials of the patient record system in Birmingham and Stoke-on-Trent, thousands of patients received letters that said they were not allowed to opt out unless they met face-to-face with NHS advisers to explain their decision.
"Our priority is to ensure that the information provided to patients is accurate. As soon as we realised that one of our early adopters had inadvertently suggested the Summary Care Record could be deleted, if a patient changed their mind, we took immediate steps to update the website and information leaflet."
A spokesperson for the ICO said: "People want the assurance that they can restrict who can access their personal details in NHS electronic records."
The ICO is still in talks with CfH to discuss how permanent deletion of summary care records will be put into practice.