The Tories have worked out how to pull off an NHS data grab: do it during a pandemic by Marina Hyde (The Guardian)
Brent Patient Voice
has written to the Brent Representative on the Governing Board of the North
West London Clinical Commissioning Group calling for a pause in the current
process that would see the NHS accessing GP’s confidential individual patient data. This is the letter:
There is great concern among patient groups about NHS Digital’s new scheme for taking confidential patient data from GP records, with patients having only until 23 June to notify any wish to opt out and the vast majority having no inkling that this is the case. We understand that concerns on these lines were voiced at yesterday’s NWL Info Governance meeting, when members heard that doctors in NE London were refusing to co-operate with NHS Digital in view of the lack of information so far shared with patients about the effects of GPDPR and their options. There also seem to be practical issues for already overloaded GPs who are supposed to process confusing opt-out applications to be made on paper within a time window of 7 days between the closing date for patients to apply and the start date for extracting data of 1 July.
In our view 99% of patients would be unable to comprehend the information about this scheme and the opt outs currently displayed on the NHS Digital website. The interaction of a Type-1 opt-out with a National Data opt-out is obscure and, despite the alleged three years during which this scheme has been prepared in secret, does not appear to have been thought through. It leaves many questions in the air, including the relevance of any opt outs from personal data sharing which patients have made previously under the “Extraction” scheme or care.data. Nor is it clear how the paperwork is to be signed if it can be sent electronically. The ‘explanation’ looks as if it has been written by a committee, not all of whose members agree with each other.
What it does say is that personal data is to be “pseudonymised” which means that the person to whom it relates can be re-identified. This is inherently risky and no good reason is given for it. If the data is wanted for planning there can be no need to re-identify individuals. Furthermore we are told that the data collected and passed to NHS Digital will not be used “solely for commercial purposes”, which means that it can be used partly for commercial purposes.
We cannot see how such a distinction can be monitored. In any case this rushed secretive exercise risks not just the hugely trusted confidential GP/patient relationship, free to all, that is the jewel in the crown of the NHS and its success as a valued healthcare system, but it undermines trust in any properly legitimated data collection. Surely it is madness to put this at risk by arranging for the mass irretrievable transfer of sensitive personal data out of the control of GPs to commercial interests, particularly without the direct consent of the patient?
Can we therefore please ask you, the CCG, its PCCC and Brent GPs to send an urgent message to NHS Digital, NHSE and local MPs demanding a significant pause in the current process:
a. to allow for a complete rethink on the scope and design of the scheme, noting that there is a fundamental difference between census-type data which is anonymised for 100 years and continually updated data relating to individuals;
b. to require NHS Digital to prepare a proper information campaign about the benefits and safeguards involved, which can then be the subject of Parliamentary and public debate;
c. to clarify and simplify the opt-out process;
d. to give GPs the necessary support for informing all their patients directly and for handling the administration aspects of the process?
EDITOR'S ADDITION The current form to send to your GP to opt out of sharing your data can be found HERE