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LMC boycotts Summary Care Record uploads over consent fears

Exclusive An LMC is advising GP practices to block the creation of Summary Care Records after NHS managers backtracked on plans for a media campaign informing patients of their right to opt out of the scheme.

Manchester LMC is advising all practices to refuse to agree to SCR uploads unless the local PCT agrees to pay for a publicity campaign to inform patients about the SCRs being created.

Dr John Hughes, chair of Manchester LMC, told Pulse the compulsory Public Information Programme (PIP) mailing providing information about SCRs and giving the patient 12 weeks to opt out of the programme was sent out in 2010, but the programme had changed since then and SCRs were only being created now.

He said that following pressure from the LMC, the PCT had initially agreed for an advert to run on TV and in the Manchester Evening News to ensure patients were adequately informed. But during later discussions, the PCT said the adverts would not run because it could not ascertain how many people would see them.

He said the LMC could therefore not support the SCR upload and he would write to all practices to urge them not to support the care record rollout as there were concerns about the ethics of the ‘implied consent’ model.

Dr Hughes said: ‘We feel patients need to know what they’re signing up for and what will be uploaded and they haven’t got that so far. If the PCT agree to the media campaign, we’re happy; if they don’t we’ll write to all practices saying we can’t support the SCR upload.

He added that practices had a duty as the gatekeepers of personal data to ensure that patients have given consent for it to be shared, and could be held to account if they were cavalier about this duty.

He said: ‘Practices should refuse to allow an upload. Practices have a role as a data controller, they are the Caldicott Guardian and they’ll hit the can if things go wrong so they have to be happy.’

Related links:

Editor’s blog: Longstanding fears over consent and confidentiality are realised

Q&A: The Summary Care Record rollout

NHS Manchester said the PCT had made a ‘concerted effort’ to inform residents about SCRs and their right to opt out.

A spokesperson said: ‘We sent communication to all our patients regarding [the] SCR in March 2010 and also provide this information to each newly registered patient [at] a Manchester practice. Since then we have continued to communicate with patients via a wide reaching range of methods such as articles in partner agency public newsletters, social media, and leaflets and posters displayed in public areas across the city such as primary care premises, libraries, A&E departments and universities.’

‘We have also attended patient participation group meetings to provide information, and find out members’ views, on [the] SCR. Discussions with [the] LMC regarding a media campaign are still ongoing and we welcome any suggestions as to how further to communicate the messages in an effective way.’

The news comes after Pulse revealed last week that thousands of records had been mistakenly created for patients who had not received any information about their right to opt out.

Dr Paul Cundy, chair of the GPC’s IT subcommittee, said: ‘I agree 100% with the LMC. If the LMC don’t have confidence in the most recent campaign, how can they agree to the uploads? The PCT say they’ve advertised in libraries, but what percentage of our patients visit libraries?’

‘Practices will listen to the LMC, because for 99% of practices SCRs are an irrelevance. They are used in less than 3% of out-of-hour consultations. Declining to submit 100% of their records to be used in 3% of consultations is not a difficult decision.’