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Care.data is refusing to die. The scheme to extract and share GP records data, officially laid to rest in July, is set to be resurrected. And it could be even uglier this time.
All the concerns GPs had over the original scheme – being opt-out only and with a murky plan to sell data to private companies – have still not been addressed in proposals released this year.
And perhaps even worse, GP practices will no longer be the ‘safe haven’ for patient data under the proposals – potentially harming trust in GPs.
The scheme was ostensibly designed to help NHS bosses design services, linking data from GP records and hospitals for the first time. Commissioners have been crying out for the data for some time so they can track the ‘patient journey’.
Currently, the NHS is legally able to share data with anyone as long as they can prove the data are being used to benefit ‘health and care’.
This broad definition has caused concern, particularly as history has shown patient records data reaching private companies – with Pulse and the Telegraph reporting secondary care data had been obtained by insurers and others.
This will mean even more work for GPs and confusion for patients
Dr Neil Bhatia
A fear that care.data would open the floodgates for these companies to receive GP records data was one of the many problems with the scheme when it was announced in 2013. The other main problem was that the system allowing patients to opt out of their data being shared was considered too complex and was poorly communicated.
When the Government finally ran a publicity campaign for care.data it was too late. The RCGP and BMA called a ‘crisis of confidence’ in the scheme (despite having aided its development) and the death knell sounded. In July, then life sciences minister George Freeman announced care.data would be scrapped, but warned a similar scheme would take its place.
Under this new scheme, patients will no longer be able to object to their data leaving their GP practice. NHS Digital will now be the ‘statutory safe haven’ for the data, able to ‘de-identify or anonymise and share them with those that need to use them’. Yet GPs will still have the responsibility of explaining to their patients how their data will be used.
The Department of Health has been consulting about the new opt-out and their response is expected in the coming weeks. If it goes ahead, patients will be given two new vetos: one over data being shared with NHS bodies, including commissioners or providers of NHS services; and the other covering non-NHS bodies, including research organisations and charities. But the new system destroys a fundamental principle – that GPs are guardians of their patients’ data.
Dr Neil Bhatia, a GP in Hampshire, who runs the advice website care-data.info, says the result will be more work for GPs and confusion for patients.
Dr Bhatia said: ‘Where does that leave us? There won’t be any confidence in the NHS at all.’
A Department of Health spokesperson said: ‘The care.data programme is categorically closed and any suggestion otherwise is inaccurate.
’This story is about the National Data Guardian’s consultation for a new patient opt outs and consent scheme. Care.data was a dataset and not an opt out scheme.’
How the care.data car-crash unfolded
- March 2013 – NHS announces it is to link up data from GP records and secondary care
- April 2013 – Jeremy Hunt pledges patients will have a ‘veto’ over data being shared
- May 2013 – NHS England announces data will begin leaving ‘ a small number’ of practices over the next few months
- August 2013 – NHS managers rule out publicity campaign for the scheme
- October 2013 – GPs told they will have eight weeks to inform patients their data is going to be harvested. NHS England bows to confidentiality concerns, launching a belated national publicity campaign
- November 2013 – Pulse reveals Oxford GP Dr Gordon Gancz and others plan to opt all their patients out of care.data, despite threats of a contractual breach
- February 2014 – Pulse reveals the NHS has handed identifiable secondary care patient data to private firms on 31 occasions
- February 2014 – The Telegraph reveals medical records of every hospital patient in England had been sold for insurance purposes. Care.data is shelved ‘to build understanding of its benefits’ after the RCGP and GPC express a ‘crisis of confidence’ in it
- November 2014 – Dame Fiona Caldicott is appointed national data guardian, to look at the problems with care.data
- January 2015 – Dame Fiona tells MPs some patients who registered an opt-out in the original scheme may have been missing out on bowel cancer screenings (this was later revealed to involve 1.2 million people)
- 6 July 2016 – Life sciences minister George Freeman scraps care.data but says work on a new scheme continues• 7 September 2016 – A consultation on the new scheme begins