The NHS Care Records Board will today confirm that patients will be asked for permission to share their record at each clinical encounter.
In a much-anticipated move, the board has acted on the recommendations of the May 2008 UCL report on the first primary care trusts to adopt the Summary Care Record.
Patients will still have to opt out of having a record created, but “consent to view” will become an integral part of using the SCR, the board agreed yesterday.
Dr Gillian Braunold, clinical director for the SCR and HealthSpace said the new consent model considerably simplifies that used in the five early adopter PCTs.
The previous hybrid model involved an opt-out on creating the record followed by opt-in for subsequent additions to it, and two sharing options – share with permission and share with any authorised user.
The UCL report said this was “widely seen as over complicated and unworkable” and was viewed by many GPs and Caldicott Guardians as unethical.
The report also found that patients saw the benefits of the SCR, but wanted control over who saw their record. It urged the SCR board to look at consent to view, which has been used successfully in Scotland and Wales.
The British Medical Association, meanwhile, refused to endorse the hybrid model and at its June 2008 LMC conference voted to call a halt to development of the SCR.
Dr Braunold said: “The very clear recommendation of the UCL report was that we revise the consent model because the model we had used was very complicated and not scalable.
“We were asking people hypothetically about how they might feel in a situation in future. Now we will be asking them to yes or no at the time they are seeing a clinician.
“Staff also feel that they need the protection of asking first. They want that protection. They are finding information governance quite hard.”
Clinicians will be able to access a record if the patient is not able to give permission, for example because they are unconscious, she added.
The new model has been endorsed by the BMA, General Medical Council, Royal College of Nursing, Royal College of General Practitioners and medical defence unions.
Professor Patricia Greenhalgh, the lead author of the UCL report, said she was delighted by the decision.
“The most consistent and disturbing finding from the UCL evaluation of the SCR was concern from NHS staff, patients, professional organisations and civil liberties groups about the original ‘implied consent’ model,” she said.
“Our data showed that very few people who received a letter informing them that a Summary Care Record would be created for them if they did not opt out actually read or understood this letter, so in reality ‘implied consent’ usually meant ‘uploading patient data without consent’.
“I am delighted that NHS Connecting for Health responded promptly and responsibly to this finding and that a new system is to be introduced that aligns much more closely with principles of good data control.”
Dr Braunold said it was a huge relief to have reached agreement on the consent model. “Now we can start to talk about the content.”
At its meeting, the board gave the go-ahead to develop the technical architecture that will enable the new consent model to be used. This would include splash screens saying “have you asked permission,” said Dr Braunold. She expected this to be in place by March or April 2009.
The early adopter sites will not be required to switch over immediately but to move at their own pace, she added. The SCR is now expected to roll out nationally in 2009/10 on a region-by-region basis.
NHS Connecting for Health is also consulting the public on the use and consent model for the NHS Secondary Uses Service.