GPC says summary care record must be ‘opt-in’

The General Practitioner Committee of the BMA on Thursday passed a recommendation for patient data to only be loaded up onto the NHS summary care record if patients have opted in to have their details shared.

The agreed recommendation states "That the GPC insists that clinical data should not be uploaded to the Summary care record without the valid informed consent of the data subject, i.e. "opt in"". The GPC also stated that it "supports the creation of Summary Care Records on the national database".

By voting for an opt-in position the GPC has become the first GP representative body to take a clear position on the thorny question of whether patients should have to ‘opt-in’ and actively consent to have their details shared, or instead ‘opt-out’ and automatically have their consent to assume to be given unless they specifically state otherwise.

The decision was reached at the end of a one and a half hour meting of the GPC, for which eight briefing papers were submitted.

At the meeting NHS National Programme for IT GP clinical lead Professor Mike Pringle set out the three options available – ‘opt in’, ‘opt-out’ or a mixture of the two in which historic patient data would be loaded onto the summary care record on an ‘opt-out’ basis, with subsequent details would be based on an ‘opt-in’ approach.

Dr Paul Cundy, chair of the Joint GPC IT Committee (JGPCIT) told EHI Primary Care that the significance of the decision was not so much that they had voted for ‘opt in’ or ‘opt out’ but that the GPC had taken a position. "We’ve never previously got a professional body that has come out clearly in support of one of the options."

He said the next step would be to see how the Royal College of General Practitioners will vote. "Both the ethics committee and informatics group of the RCGP are recommending that they support opt-in".

In a statement NHS Connecting for Health said adopting the “opt-out model” was thoroughly examined including by the forerunner to Care Racords Development Board and the CRDB’s Ethical Advisory Group – which validated opt out as the policy. "But we note the position of the GPC and recognise that there is an ongoing debate on the issue."

Dr Cundy said that one of the weaknesses of CfH’s proposed consent model was that the opt-out approach only applied to the uploading of historic data from local GP practice systems to the summary spine record, with the addition of subsequent events to be based on an ‘opt-in’ approach.

The chair of the JGPCIT Committee said that one of the main arguments against an ‘opt-in’ approach across the board had been the additional workload that it would place on GPs. As part of the vote in favour of opt-in consent the GPC recommended that it work with the DH and CfH "to ensure that an appropriate publicity campaign is mounted".

He added that NHS Connecting for Health had become far less prescriptive about what consent model should be applied, and was now clearly listening to the medical professions. "CfH is taking much more cogniscence of what the professions are saying. In particular they do generally seem to be listening to the views expressed by GPs."

In part, he added, this was because CfH had rowed right back from any big bang approach to the introduction of the Care Records Service, beginning with summary care records. These are now to be introduced much more gradually.

Dr Cundy said that basing the care record on explicit ‘opt-in’ consent would initially be more difficult, but that it provide a better prospect for success in the long term as both patients and clinicians would have greater confidence in it.

Under current plan is that the summary care record will initially only be populated from the local GP records. Initial trials of uploading data from GP systems to the summary record are due to take place in a small number of practices in a particular ‘geography’ towards the end of 2006.

A briefing paper submitted to by the JGPCIT committee to the GPC argues that a slow up-take based on an "opt-in" model may be favourable. "90% of patients consult their GPs within every 3 years – so after a year 30 million in England will have had a face to face opportunity to opt-in to the CRS."

The paper notes that with NHS CfH now proposing that practices must be accredited before they can upload data onto the spine and into its summary records the CRS programme is already going to create a slow uptake as it "may take 5 years to accredit every single practice".

Dr Cundy suggested that going for explicit consent could remove the need for some of the mechanisms required by the mixed model. "Potentially with opt-in you don’t need the sealed envelope or to make the same distinction between sensitive and non-sensitive data."

Providing background on the NHS Care Record the briefing papers outlines the three components of the:

• The Local Detailed Record – the full local detailed record held by an organisation, such as the GP record held by an organisation on their database such as a GP practice system or hospital electronic patient record.
• The Summary Care Record – an extract of the GP record containing a copied subset of important information held separately on the national database known as the spine.
• Healthspace – the patient portal to the national patient records database for patient to enter and access their own information, through which they can view their own summary care record and eventually their local detailed record.