GP practices will contact patients individually to warn them their personal medical data will be shared unless they opt out, under new pilots of the controversial care.data scheme to launch later this month.
Practices in NHS Blackburn with Darwen CCG will be the first of the four care.data ‘pathfinder’ areas to launch its patient communications at the end of June, with schools due to break up on 23 July.
The extraction of patient data will not begin until patient communications have been evaluated by the national data guardian Dame Fiona Caldicott, but once this is satisfied extractions of identifiable data could start as early as September.
NHS Somerset and West Hampshire CCGs have said they will begin in September, and the the three CCGs in the final area, Leeds, have not confirmed when they will start testing communications, but is also thought to be aiming for September.
Care.data was halted in February 2014, less than a fortnight before data extraction was due to commence, after concerns that patients were not sufficiently informed about the scheme; two thirds of patients said they didn’t recall receiving a national information leaflet about the scheme.
Tim Kelsey, NHS England’s national director for patients and information and the senior responsible officer for care.data has said communications around the scheme will be tested in between 100 and 500 GP practices. So far 104 practices have agreed to participate in the pilots across Somerset, Blackburn with Darwen and Hampshire of a possible 155.
But the scheme retains the opt-out model, which was criticised by GPs. LMC leaders called for confidential patient data to be anonymised before it leaves the practice rather than requiring patients to contact their practice to opt out.
A statement released on behalf of NHS Blackburn and Darwen CCG said: ‘Blackburn with Darwen will be ready to start fair processing (the time patients have to make a decision whether to opt out) at the end of June; Somerset and West Hampshire wish to start at the beginning of September.’
‘Leeds have not confirmed when they will commence testing communications but are also working towards the beginning of September. A total of 104 practices across Blackburn with Darwen, Somerset and West Hampshire have signed up.’
It adds: ‘Extraction is likely to take place between September and November depending on how fair processing testing communications was conducted. GP systems are currently undertaking the work required for extraction to take place.’
But Phil Booth coordinator of the privacy watchdog medConfidential told Pulse the communications programme was being held at the worst time.
He said: ‘It runs over the summer holidays, which is the stupidest time to be sending this stuff. They’re sending them out over the period where they might be buried under junk mail.’
And he added that there are still no formal directions on how patient opt out will work, after Pulse revealed that 700,000 patients had had their wishes to opt out of wider NHS data sharing overridden after it was discovered the opt out offered would harm their direct care.
Pulse revealed earlier this week that a CCG was going ahead with a record-sharing scheme similar to care.data, where GP records will be used without patient permission to tackle ‘high cost’ patients.
Dr Grant Ingrams deputy chair of the GPC IT subcommittee said of GPs it was ‘going to be wait and see, hope they do the pilot properly, and have it properly assessed afterwards, and that they’ve learnt from their initial mistakes.’