An MP has tabled a Parliamentary motion calling for the controversial care.data scheme to be ‘indefinitely’ delayed until further consultation takes place and patients are asked to opt into rather than opt out of the programme.
The Early Day Motion from Roger Godsiff, the Labour MP for Birmingham Hall Green, says signatories have ‘no faith whatsoever in Government assertions that patient data will be coded in such a way as to guarantee anonymity’ and expresses concern over the ‘consistent history of large scale data mismanagement and leakage across Government’.
Early Day Motions rarely result in a Parliamentary debate and are usually used by MPs as a device for publicising issues. But the move reflects growing scrutiny and concern about the care.data rollout, which has attracted a raft of front-page headlines in the national press this week and prompted intense debate.
It comes as the Health and Social Care Information Centre (HSCIC) revealed that a phoneline set up to answer queries from patients regarding the data-sharing scheme has received almost 2,400 calls in the first few weeks of a national publicity campaign.
Leaflets with information about the care.data programme, which will see patient records extracted from all GP practices, linked to secondary care data and made accessible to researchers and private companies, are in the process of being sent to every household in England. Supporters of the scheme have argued it will have significant benefits for medical research, and NHS IT chiefs have insisted that patients’ data will usually only be shared in anonymised or ‘pseudoynmised’ form, with any releases of identifiable data subject to strict privacy safeguards and a public interest test.
But the scheme has caused consternation amongst GPs, who have a statutory obligation to allow extractions but also a prior obligation as data controllers to inform their patients, while privacy campaigners have also expressed major concerns.
Mr Godsiff said he was fundamentally opposed to patients being asked to opt out of rather than opt in to the scheme.
‘The whole process begins to undermine fundamentally the long established principle of patient confidentiality, and is a recipe for confusion,’ he said. “The NHS just seems to think patronisingly that all it needs to do is to throw in health-speak phrases such as “improve delivery”, “for the benefit of the service” and “in the public interest”, and people will just roll over and allow their data to be taken because it’s for their own good.’
‘I have absolutely no faith in assertions by Government that patient data will be coded in such a way as to guarantee anonymity…There is also the Government’s record as a whole on data management or rather, chronic mismanagement and leakages. I believe that patients themselves, not NHS England, should determine when and where their own medical information is used and for what purposes.’
Dr Neil Bhatia, a GP in Yateley, Hampshire and a campaigner on IT issues, welcomed the motion: ‘Anything that brings it out into the public, and gets people talking about it, they mind find out about it. It can only be a good thing, whether or not this goes through. It gets a discussion moving.’
Dr John Lockley, a GP in Ampthill, Bedfordshire, said: ‘I think it’s extraordinarily remiss that they should be extracting all this private information, without first getting permission. And I think that it is, therefore, very good that a member of parliament is drawing attention to that fact – but I don’t think a MP should need to be drawing attention to that fact.’
He added: ‘I do like the idea of using data like this, for research and for organising the NHS, but I believe very strongly that it needs to be done ethically, and that it could be done and should be done in a different way at the moment in order to make it ethical.’
Meanwhile a spokesperson for the HSCIC said its patient information phone line had answered ‘nearly 2,400’ calls since it was set up on 6 January, as of Monday this week.
‘As we have not operated a comparable patient information line before, it was not possible to set an expected baseline [for expected level of calls],’ the spokesperson said.
The top five questions from patients were:
– Can I change my mind?
– I can’t get to my GP practice to object what should I do?
– How long have I got to decide if I want to object?
– Do I need to do anything if I’m happy for my information to be used?
The Early Day Motion in full
PATIENT CONFIDENTIALITY AND CARE.DATA
That this House views with the greatest concern plans by NHS England and the Health and Social Care Information Centre HSCIC) known as care.data , the purpose of which is to extract and link large amounts of patient data as part of NHS care in order to improve the delivery of healthcare and to benefit researchers inside and outside the NHS; shares the concerns of the Information Commissioner, who delayed the start date for the harvesting of patient data by a year to spring 2014 in respect of the confidentiality of the extracted data, lack of public awareness and the extent of information sharing; welcomes the plans by NHS England for a public awareness campaign but believes that these plans, which operate on the assumption of ‘presume consent’ unless individuals ‘opt-out’, fundamentally compromise the long established principle of patient confidentiality and will lead to unnecessary confusion; has no faith whatsoever in Government assertions that patient data will be coded in such a way as to guarantee anonymity, particularly so it reserves to itself the right ‘in the public interest and for the benefit of the health service’ to allow access to identifiable data and by its consistent history of large scale data mismanagement and leakage across Government; believes that it should be patients themselves and not NHS England who should determine when and where their own medical information is used and for what purposes; further believes that if the Government wish to improve delivery of healthcare they should first address current, deep-seated issues of health mismanagement, accompanied by a lack of transparency and oversight in the NHS ; and calls on HMG to delay indefinitely the introduction of care.data until further consultation has taken place with patients and patients groups and at the very least the principle of ‘opting-in’ to such a scheme has been accepted as a central principle.