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Biggest risk to care.data scheme is potential loss of GP 'confidence' in benefits of scheme

A major risk to their programme to extract data from GP records is that clinicians may not have ‘confidence’ in the benefits of the scheme say NHS leaders, in a document seen by Pulse.

The programme update issued last week flags up a number of risks which may potentially jeopardise the scheme, chief of which is a ‘potential lack of clinical engagement’ and ‘confidence in what is being delivered’.

It also confirms that extractions of data from GP records are planned to begin in March 2014, with the full-rollout of the scheme to all practices three months later in May.

It comes as Pulse spoke to another GP who was planning to opt all their patients out of the care.data scheme - in defiance of legal advice from the GPC.

A publicity campaign was announced in October by NHS England after widespread disquiet that GP practices were solely responsible for informing the public about the scheme and calls from GPC to be more transparent with patients about the ‘fundamental’ shift in how NHS will be using their data.

The care.data scheme will see the Health and Social Care Information Centre (HSCIC) routinely extracting identifiable patient data from GP practices and hospitals, which can then be shared in identifiable or de-identified forms to other sections of the NHS and to third parties, such as researchers or private companies.

Leaflets explaining the scheme will be distributed by NHS England to all households in England in January next year, and patients will have three months from then to opt-out of the scheme before their data may be included in the first extraction. If a patient misses the data extraction deadline they will be able to request any information held by the HSCIC be anonymised, but data cannot be deleted once it has left the practice system.

The latest update from HSCIC said: ‘A phased rollout is being readied over a three-month period with full extractions anticipated in May 2014 (first extraction from March) allowing time for the HSCIC to assess the quality of the data and the linkage before it is made available to commissioners in anonymised form.’

It added that a ‘potential lack of clinical engagement (support for programme from clinicians) or confidence in what is being delivered’ was one of the major risks to the programme, alongside an ‘unknown amount and complexity of defects’ that may occur during extractions and concern over funding for the programme.

It also admits that the plans to sell data from the programme to private companies and researchers for £1 - as revealed by Pulse in August - had run into trouble with NHS England.

The document says: ‘Whilst legal advice indicates the effective removal of charges may be possible, there remains a need to clarify principles with NHS England in terms of where charges would be reduced … discussions are underway with NHS England to agree a way forward.’

Dr Neil Bhatia, a GP in Yateley, Hampshire, who campaigns widely on the issue of care.data told Pulse that he was concerned that the national publicity campaign may not be enough to protect GPs from complaints from patients.

He said: ‘I remain uncertain whether the leaflet drop will “protect” GPs. I’m sure it won’t protect against complaints from patients who felt they had not been informed properly.’

Two GPs have spoken to Pulse, saying they plan to opt their entire patient list out of the care.data scheme unless their fears for patient confidentiality are not addressed.

Another GP from inner-city London - who wished to remained anonymous - has also told Pulse this week that they ‘cannot see any clinical justification for the identifiable data extraction’ and that they will be opting all their patients out of the scheme unless they specifically wish to remain in it.

They said: ‘We will proactively ask people via reception if they want to opt in once the information is in the public domain.  We will provide posters to inform people that they need to choose to opt in, and will include a leaflet on repeat prescriptions.

‘We will opt everyone out in the New Year once the timeline for the Government sending out the household information is clearer. If there can be a guarantee that patient information will not be sent beyond the HSCIC without explicit consent, then we will opt everyone in.’

Dr Clare Gerada RCGP Chair August 2011 online

 

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Readers' comments (3)

  • How can there be a 'loss' of confidence when there wasn't any to begin with?

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  • This is coming from the same outfit that have squandered billions on futile grandstanding IT systems; allowed unfettered access to personal data; then shared with the USA. The functional incompetence with data loss and lack of security coupled with hacking leakage should make every citizen opt out. What is needed is a public campaign to expose the central spying mentality which is now invading personal medical records. There should be a big no from everyone.

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  • Too right, no confidence in the care data, no confidence in IT, no confidence in the NHS reforms, no confidence in the new contract fiasco.....pretty much there is no confidence in anything....

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