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Patients nervous over care records

By Christian Duffin

Far more patients want to opt out of the Summary Care Record than Connecting for Health has claimed, a new Pulse survey suggests.

The poll of 2,600 patients found most were broadly supportive of care records in principle – but as many as a quarter wanted to opt out of the scheme.

The research, carried out for Pulse by online market research company Opinion Health, found more than half of patients had concerns over confidentiality, and three-quarters wanted to be asked to give their explicit consent to take part.

The survey gives one of the first indications that unease over the project exists in patients as well as doctors, and raises questions over Connecting for Health's implied consent strategy.

Patients in early adopter areas have been sent a letter outlining the plans and given 16 weeks to ‘opt out' of the scheme. So far just 0.32% of patients have chosen not to upload a care record, a figure Connecting for Health has used to justify its policy.

Connecting for Health has also implemented a wider public information programme in early adopter areas, the effectiveness of which will be measured by the forthcoming independent evaluation.

Katherine Murphy, director of communications for the Patients' Association, claimed: ‘Patients do not know that they can opt out of the system – GPs will not tell them.'

She said that the Patients' Association backed the Summary Care Records system in principle, but argued patients must have quick access to correct any mistakes or outdated details.

‘Patients should be given a choice about whether they want the records. We think the Government will go ahead with this without any proper consultation with patients.'

However, patients with conditions such as diabetes would benefit from care records if they needed treatment while away from home, she added.

In May, a second patient group, Patient Concern, told MPs patients in early adopter areas had been ‘leaned on' and ‘deliberately discouraged' from opting out.

Responding to Pulse's survey this week, Joyce Robins, co-director of Patient Concern said: ‘We thought that the records would be held by the patient themselves on a disc or at least held securely at the GP surgery.

‘But now the Government wants to store everyone's record on a website. Other people can hack into those details.'

The survey also shows widespread lack of patient knowledge over Connecting for Health's plans, with more than half of patients having no idea that plans for Summary Care Records existed.

Full patient survey results

Full survey results

Results in full

To see the full results of the survey, including additional questions and a regional breakdown, open the file at the top right.

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