In September, GPs in pathfinder sites are due to start writing to patients about the care.data programme and six weeks after that data extracts could begin.
If it goes ahead, it will be the first substantive move for the project which aims to link patient data from GP record systems with hospital data for secondary uses.
The project is due to be tested in more than 100 pathfinder practices before wider roll-out. A total of 54 practices from Blackburn and Derwent and West Hampshire CCGs have signed up.
Both CCGs plan to send out letters to patients in September. In Somerset the CCG is preparing a practice toolkit for its participating practices and has also predicted that letters will be sent out in September. The Leeds pathfinder, covering three CCGs, has 12 practices participating so far. A spokesperson said its current plan was for an autumn launch.
Tim Kelsey, senior responsible officer for the project and national director for patients and information, told an NHS England board meeting earlier this summer that NHS England was committed to care.data because ‘without it we know patient care is not as good as it could be'.
He said the project would help to support improvements in clinical quality such as earlier diagnosis of cancer by GPs as well as supporting commissioning and research.
He added: ‘It is also about testing a new standard of ensuring that citizens are aware of the rights they have in relation to use of their data when it’s not for direct patient care.’
The project was due to launch last year but was delayed after a public leaflet campaign was criticised for failing to explain the project properly and not including an opt-out form.
National data guardian Dame Fiona Caldicott was brought in to advise on the project and last December issued a series of conditions which she expects to be met before the pathfinder programme begins.
Hampshire GP and information governance lead Dr Neil Bhatia remains deeply concerned and has set up his own website about the project.
He says: ‘The letters that are due to go out in September are going to be absolutely critical. Patients need to know what they are saying no to and what they are saying yes to.’
Dr Bhatia believes this is a massive task because patients will need to understand not only what is involved in the care.data programme but also how that relates to other data sharing schemes such as local care record projects, national audits and risk stratification programmes.
Confusion over care.data
Dr Bhatia says there is ‘abject confusion’ about the use of Read codes for these different projects and that even between pathfinder sites there are differences in their planned approach.
At the 2014 national LMCs’ conference a motion was passed calling for care.data extracts to be on an opt-in basis and that remains GPC policy.
So far only 2% of patients in the pathfinder areas have opted out but Dr Bhatia predicts that will rise as letters are sent out and in areas where GPs may be less enthusiastic about the scheme.
Dr Paul Cundy, Wimbledon GP and chair of the GPC’s IT committee, says the GPC wants to see Dame Fiona’s requirements satisfied in full before the pathfinder programme begins.
‘That would obviously be a significant step forward although it won’t necessarily allay every GP’s anxieties about this,’ he adds.
Phil Booth from the privacy group medConfidential, sits on the Care Data Advisory Group which has been consulted on the content of the patient communication. He says: ‘We are presented with drafts each of which is said to be final, each of which we have said is nowhere close.’
He says directions and regulations needed to run the scheme have yet to be put in place adding further pressure to the September timescale. He adds: ‘I find it hard to believe that the proper due process will be completed by the end of September but if they go ahead anyway that could crash trust in the entire process.’
GPs need more information
Mr Booth is also concerned that not enough information about care.data has been provided to GPs outside the pathfinder areas, who he predicts will start to be asked questions about the scheme once the pathfinder sites get underway.
‘A lot of GPs think care.data is dead,' he says. 'There needs to be national clarity and the profession should be properly engaged and supported at the trigger point when the pathfinder information goes out.’
A spokeperson for NHS England told GPOnline that no data would be extracted from the pathfinder sites until Dame Fiona Caldicott is satisfied with the proposals and safeguards.
She added: ‘The programme is not being held to artificial deadlines and all involved are committed to getting this right for patients and right for the NHS.’
|care.data: At a glance|