Exclusive The largest region involved in the care.data pilots has only been able to attract 12 practices, which has been described by campaigners as ‘risible’, Pulse can reveal.
An FOI request received by GP and data sharing campaigner Dr Neil Bhatia revealed that only two out of 43 practices in NHS Leeds South and East CCG have signed up to the scheme, while five practices in both NHS Leeds North CCG and NHS Leeds West CCG have agreed to participate.
The latest figures mean that just over 100 practices across the country have agreed to take part in the pilot scheme – above the 100 minimum targeted by NHS England, but way short of the 500 maximum specified.
Campaigners said that the low uptake in the biggest pilot area was ‘risible’ at this stage, particularly when Leeds was supposed to the key test site for communicating the scheme in an urban area.
Care.data was delayed in February 2014, just weeks before it was due to roll out nationwide, amid concerns about the lack of public understanding and the potential legal conflict it placed on GPs as the ‘data controller’ for their patient’s information.
When announcing plans for its relaunch, NHS England pledged it would be conducting pilots across six CCGs with the aim of covering a range of demographics and urban and rural populations.
But in Leeds, which is the only city among the pilots, the CCGs have struggled to attract practices to sign up.
A spokesperson for the three Leeds CCGs told Pulse they were ‘in the process of inviting GP practices to be involved in the pathfinder stage of care.data’.
However, it also said was planning to ‘begin testing communications directly with the public in autumn 2015 along with the other pathfinder CCGs’, and Dr Bhatia said that it wouldn’t be able to accurately represent this with such low numbers.
He said: ‘Twelve practices aren’t going to be representative really. but you can never extrapolate totally.’
Phil Booth, coordinator of privacy advocacy group medConfidential, told Pulse: ‘Just 12 practices in Leeds is risible at this point. Leeds was supposed to be care.data’s test of an urban area, and let’s not forget it is [where NHS England is based].
‘It’s hard to see how the pathfinders can be a representative test of communications for a “full national roll-out” if NHS England can’t – even with its “incentives” – scrape together more than a dozen practices in a single city.’
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GPC deputy chair Dr Richard Vautrey, a GP in Leeds, told Pulse that the reason for the low uptake was partly because there is already a local record-sharing scheme in the area, and there was ‘concern that doing care.data at the same time would be confusing patients and could undermine their confidence in the local sharing arrangements which are generally supported’.
So far just over 100 practices have signed up across Somerset (52), West Hampshire, and Blackburn with Darwen (23), and the twelve Leeds practices.
At the same time, Pulse has learned that the first pilot in NHS Blackburn and Darwen CCG has delayed its relaunch of the scheme until after the summer holidays to give GP surgeries more time to prepare. The other pilots in West Hampshire and Somerset are set to go live in the autumn.
The CCG announced last month that GPs would begin sending out letters to patients in June, with pathfinders in Somerset and West Hampshire waiting until the early autumn.
Mr Booth told Pulse the national scheme was still contending with too many unresolved issues to launch pilots, including more than 700,000 patients who already opted out of data sharing who have had their wishes overruled.
He told Pulse: ‘It is sensible to delay right now, because there are so many things that are still not in place – though not all of those are within Blackburn with Darwen CCG’s gift.’
Mr Booth said it would be ‘batty’ for them to go ahead with the launch while there were hundreds of thousands of opt-out requests that are not being honoured.
An NHS England spokesperson said: ‘Recruitment is ongoing and we are encouraged by the number of GP practices that have signed up so far.’
