Wednesday, 22 January 2014

Roger calls for indefinite delay on plans to extract and sell NHS data


Birmingham Hall Green MP Roger Godsiff has tabled an Early Day Motion (EDM) calling for an indefinite delay on the introduction of plans known as, which will extract and link large amounts of patient data.

Speaking from Westminster, Mr Godsiff said: "The NHS wants to extract this data to ‘improve the delivery of healthcare and to benefit researchers inside and outside the NHS' but I have grave reservations about the whole project.

“By rights this programme should have been up and running by now, but the Information Commissioner was so concerned about the project that the start date for the harvesting of patient data was delayed by a year to spring 2014, because of issues relating to the confidentiality of the extracted data, lack of public awareness and the extent of information sharing”. 

While welcoming the current public awareness campaign by NHS England, Mr Godsiff believes that these plans are flawed because the whole programme operates on the principle of 'presumed consent'. This means that unless individuals notify doctors that they want to 'opt out' out of the whole process, the NHS takes the default position that individuals have consented to their data being taken and used.

“I believe that 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!”

He continued: “I have absolutely no faith in assertions by Government that patient data will be coded in such a way as to guarantee anonymity, particularly as the NHS will reserve to itself the right in ‘the public interest and for the benefit of the health service’ to allow access to identifiable data. 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”.

Mr Godsiff continued: "It has been one of the blackest years on record for the NHS. The current, deep-seated issues of health mismanagement, accompanied by chronic lack of oversight and corrosive levels of secrecy, have led directly to patient deaths, as the Mid-Staffs NHS Trust saga proved. I find it very difficult to understand why the Government should insist on introducing a measure such as this at a time when it already has its hands full dealing with current problems”.

He concluded: “I believe that the Government should first sort out the problems that face it immediately before even contemplating introducing a new system such as

“I'm sure that many commercial companies which want to bid for lucrative NHS contracts would relish the prospect of being able to access this kind of data in any form, anonymous or otherwise, in developing a bid for such work. However, at the moment it is just another worrying example of Government encroaching on confidential, personal data, seemingly oblivious to the consequences for individual citizens.”

You can read the Parliamentary Questions Roger asked the Government on last week at:

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