NHS backtracks on e-records consent policy

Patients will have more control over how their information is shared

The NHS has changed the consent model for accessing a database containing personal information, allowing patients more control over which details can be read by medical practitioners.

Patients will now be asked for permission before their Summary Care Records (SCRs) are viewed by NHS staff, and information deemed particularly sensitive will be granted another layer of protection.

Previously, patients had to contact their GP to opt out of the database if they did not want their records included. If they did not opt out, their information would go automatically onto the database.

The revision of policy follows a report by University College Hospital (UCL) published in May this year, which raised concerns about the complexity, usability and ethical integrity of the system.

The NHS has addressed concerns raised by medical practitioners in an attempt to find a better solution for patients, according to Gillian Braunold, clinical director of the SCR and HealthSpace programmes.

"The UCL report that we commissioned confirmed our view that it was important to change the consent model to simplify it and make it work better for patients and clinicians," she said.

"We have listened to doctors and nurses who have raised concerns about the complexity of the earlier model. We created mousemats with instructions, and the very fact that we had to leave a reminder on people's desks about how the system worked suggested there was a problem.

"We are certain that we now have a model which will work across a full range of care situations."

Patients will now be able to choose whether to deny permission for records to join the database, whether they want to be asked this question each time they have a medical encounter, or whether they want to allow full permission for all details to be uploaded.

Patient choices are then audited and, in the event of a privacy setting being overruled, the privacy officer will be alerted and the situation will need to be justified.

This may happen in situations where the patient is unconscious, for example, or if it is necessary in the interests of public safety.

A new tool will offer peace of mind to doctors who may have been concerned about inadvertently sending certain kinds of information to the database, along with more routine issues.

This will allow sensitive information on pre-defined issues, such as abortion and sexually transmitted disease, to be shared only with explicit consent.

And if a patient also wants to prevent the sharing of information on an unlisted issue, they can decline permission when they are still with the doctor at the point of care.

"The UCL discussion described clearly that it is better to address consent at the point of care, especially when dealing with difficult-to-reach groups and people with limited cognitive ability," said Braunold.

Trials at early-adopter sites are now coming to an end, and the system is expected to go live across the UK in the 2009/10 financial year.

There will be no pilots of the amended features, which will affect the viewing element of the system and not individual suppliers' products.