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As Mr Orwell correctly predicted some time ago, the fashion for using words meaning something entirely different to the historical definition is rife Thus "truth" means "propaganda" "transparency" means "obfuscation" "health service" means "episodes of illness service" "challenge" means "problem" "patients engagement" means "we selected a white middle class (man) who could be relied upon not to make waves in exchange for a post stroking his ego" "opportunity" = "we are really in deep shit, so we have to do something" ...any more? On 20 May 2015 at 16:35, Mary Hawking <[log in to unmask]> wrote: > It looks as though the general lack of Transparency in NHS England (and > HSCIC) programs extends far beyond the Care Data Program Board! > > Have a look at this article on the 100,000 Genomics Program > > > http://www.ethicsandgenetics.org/blog/privacy-and-the-100-000-genome-project/ > > "The collection and sequencing of 100,000 individuals’ genetic > information is intended to constitute the first phase of what will be a > national genomic database. The ‘50 million Genome Project’ will include the > genomes and clinical data of all NHS patients in England and Wales." > > (has anyone heard about this extension to the whole population, and if so, > what consent model will be used? Or is this, like Care Data, an opt-out > program?) > > The public documentation states that all data will be anonymised: but in > fact it wil be pseudonymised. > > "The DoH’s justification for this sleight of hand defies belief. It is > stated that in “public access documents the term ‘anonymisation’ has been > used because the term ‘pseudonymisation’ is not widely understood. It is > planned that a footnote clarifying the terminology will be added to > communication material”. Needless to say this is wholly inadequate: > ‘anonymisation’ and ‘pseudonymisation’ are not synonyms, and to pretend > otherwise – with only a ‘planned’ footnote to explain as much – directly > contradicts the principle of transparency." > > Of course this - and other examples such as the failure to publish the > minutes and papers of the Care Data Program Board - do lead me to wonder > what meaning NHS England and/or HSCIC give to the frequently used term of > "Transparency". > > Does anyone know? > > Mary Hawking > > Save the date > > PHCSG AGM & Annual Conference 15th/16th October 2015 > >