Patients who do not opt-out of the Summary Care Record prior to one being created for them will not be able have their record deleted later, it has been revealed.
If a patient subsequently opts out of the SCR their record will be ‘masked’ and become inaccessible by NHS staff, but it will not be deleted.
The reasons given by the DH are a combination of medico-legal requirement, to preserve a future audit trail; and technical explanation that the way the system has been prohibits deletion of individual records.
The clarification on the indelible nature of each SCR comes in a response to a Freedom of Information request made by GP Dr Neil Bhatia last month.
Dr Bhatia, who is vigorously campaigning against the system, requested details of the mechanism by which patients at Bury PCT could get their uploaded SCR completely deleted if they had initially opted-in to the system and later changed their mind.
In its response to Dr Bhatia’s FOI request the PCT said: “If the patient changes their mind later, after a record has been created, we have to retain a copy of the record for audit trail since it may be required to demonstrate the reasons behind a previous clinical decision.
“However, the SCR would be made unavailable from the moment that the patient no longer wished it to be used, so that no access is possible in a care situation. Therefore, there is no form available to have the record completely deleted if the patient has a record created in the first place.”
The response goes on to explain that the 93C3 read code, which is used to identify patients who do not wish to have an SCR, means that when the record is synchronised with the national Spine database, a blank care record will replace the existing SCR for that patient. However, this does not delete the original record, but instead ‘masks’ it.
An NHS Connecting for Health spokesperson reiterated Bolton PCT’s response saying: “A patient may opt out before a SCR is created. If the patient changes their mind later, after a record has been created, we have to retain the record since it may be required to demonstrate the reasons behind a clinical decision.”
The latest clarification on the operation and technical design of the SCR service raises concerns that patients are not aware that once they have opted-in to the summary care record they will not subsequently be able to have their data removed.
Information leaflets given to patients at numerous PCTs, including South Birmingham and Stoke-on-Trent, tell patients that they will be able to change their mind about the SCR at anytime.
Dr Bhatia said: “You have one chance to prevent your medical records from being stored on the NHS database for eternity.
“The only way to prevent this is by opting-out of the NHS database. You cannot change your mind once your records have been uploaded.”
In March NHS Connecting for Health has dropped the requirement for patients to appear in person if they wish to opt out of having an SCR.