The NHS will push on with its controversial plan for an automatic patient opt-in for healthcare records, even after a government advisory group questioned the ethics and legality of the system.
But it has made a fundamental concession to GPs and patients raising data protection and security concerns, by insisting that doctors will now have to ask patients to view their records.
Yet a government-commissioned report by University College London said that during trials, a number of patients had not understood the implications of having their health data stored on the NHS Care Records System, called the NHS "spine", in spite of having been posted information.
UCL highlighted major ethical and legal questions over automatically opting-in patients to a system they did not understand, and creating their records unless they actively objected within a set timeframe.
But the NHS has decided not to move away from that model, following extensive consultation with external stakeholder body the Summary Care Record Advisory Group. Patient records will continue to be created automatically, unless patients take the steps to opt out.
Summary care records contain data such as prescriptions and allergies, and will be updated by doctors each time patients are treated. Some data described as “sensitive”, such as terminated pregnancies and sexually transmitted diseases, will not automatically be added to the record.
Nevertheless, the NHS said it had “listened” to concerns. In a major concession, clinicians will now always ask patients before they access their records.
If patients decline, doctors cannot access their records. The only exception is in emergencies, for example when a patient is unconscious, and then that access will be audited later to check it has not breached guidelines.
Patients will now also be asked by GPs and hospital doctors at treatment if creating their records in the first place is acceptable, rather than just relying on paper information through the post, but it is unclear how much more this will improve their understanding.
Asked by Computerworld UK whether these steps addressed the concerns raised by patients and the advisory group, Dr Gillian Braunold, clinical director of the summary care record, said she was satisfied it did.
“We’ve spoken to many advisory groups. These are the correct steps to be taking to address the concerns,” she said, adding that it was now “easier to opt-out”.
Addressing legality concerns regarding the consent model, she said: “The General Medical Council are comfortable with it. The MPS [Medical Protection Society] were happy even before”. The British Medical Association, which previously objected to the rollout, and the Information Commissioner had also approved the model, she said.
The reason for the UCL evaluation was “for these issues to come out” and be addressed, the NHS said.