BIRMINGHAM MP ROGER GODSIFF CALLS FOR INDEFINITE DELAY ON NHS PLANS TO
EXTRACT LARGE AMOUNTS OF CONFIDENTIAL PATIENT 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
care.data, 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 care.data.
“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
care.data last week at:
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