Summary care records - you might die, but they never will
Once you can opt in, you can never opt out
Patients can decide whether or not to have their Summary Care Records included on the NHS national database, but if they change their mind afterwards there is no way to delete the record.
This emerged after a concerned Hampshire doctor asked several Primary Care Trusts what their policy was using Freedom of Information requests.
Dr Neil Bhatia wrote to the Information Commissioner's Office last week to ask if they consider the policy adequately follows data protection principles.
Bhatia said: "The government can in an instant, effortlessly and for free lose 25 million child benefit records but appears to have neither the funds not the technological capability to delete an individual medical record uploaded to the Summary Care Record."
The policy of automatically assuming everyone in the country is happy to have such an entry on a government database is already controversial. Forcing people to opt out is already unpopular, so stopping people from deleting their records is likely to raise more concerns.
The Department of Health told Bhatia in response to a previous request: "Whilst Health Ministers have determined that patients need not have an SCR if they do not want one, this should not be understood to mean that once created an SCR can be completely removed. Records can be made inaccessible to staff in a number of ways, but the cost of completely removing them would be prohibitive.
"As with all digital records systems, complete removal would require the hardware holding records to be completely sanitised. This is a process that destroys all data held, for example on a server or hard drive, and not just a particular record."
The DoH also claims "the issue of audit and the medico-legal evidential significance of the SCR" means that complete removal would be inappropriate even if technically possible. Bhatia pointed out this would only be true if the record had been accessed and changed.
Earlier this month the National Programme for IT changed the rules to allow people to opt out of having an SCR without appearing in person at their doctor's surgery.
Bhatia's surgery and website has advice for patients wishing to opt out of the project. If you don't want your medical records included, you should get in touch with your doctor sharpish.
A spokesperson for the ICO told us: "The ICO has met, and continues to meet, with NHS Connecting for Health about data protection matters, including data retention. The Data Protection Act clearly states that all organisations must store personal information for only as long as necessary. Personal information that is no longer required must be deleted to ensure compliance with the Act."®