Truly appalling
Routinely collected NHS patient data are a great resource for use as starting point for enquiries into factors pertaining to health and into how patients interact with services. For ordinary purposes fully anonymous data suffice; there being no reason why most such ought not be freely (or at transfer cost) available to any individual or group seeking access. Rendering data anonymous is by degree rather than absolute. For instance the ONS produces small area statistics at the finest level after having noise added to the numbers to make it impossible to identify an individual or household with confidence; yet it remaining clear that these data do pertain to a clearly delineated set of individuals.
Data not rendered securely anonymous ought be available for use only in the following circumstances.
(1) By clinicians exploring data sets they compiled for professional purposes (patient records) in order to produce descriptive statistics about their patient population and perhaps identify subgroups to target specific services (e.g. screening).
(2) Bona fide administrators of health service provision but these furnished with only such detail about individual patients/clients as necessary for administrative functions at their level in the organisation.
(3) Research - this within a spectrum encompassing clinical (e.g. specific studies into aetiology) and service management interests (e.g. seeking to understand reasons for 'non-compliance' with requests to accept an invitation to aortic aneurysm screening).
The third category merits considerable attention to confidentiality. Any use, not designated as routine or harmless, of data with identifiable characteristics ought go through independent scrutiny by trustworthy (to health professionals and to the general population) individuals. With respect to clinical research involving making contact with patients (e.g. via questionnaire), and perhaps making demands upon them (e.g. participation in a clinical trial), there is a well established set of geographically local and of nationally based committees charged with scrutinising adherence to ethical and legal principles.
It is inconceivable that under the present regimen of confidentiality and ethics any commercial entity would be permitted directly to approach patients (for legitimate research) or to market products to patients by any means.
In light of the above we need to know in detail answers to the following questions.
(1) Precisely what data are to be sold to commercial entities? Why should not these data be freely available (at distribution cost) to all legitimate research groups and scholars?
(2) How does the government justify extending the shaky notion of 'intellectual property' to communal data?
(3) Shall people in contact with the NHS be granted absolute right permanently to opt out from transfer of information about them beyond the confines of the NHS?
There is so much more that could be said about this dodgy exercise but, suffice to say, it is a natural consequence of entrenched neo-liberal pseudo-intellectual economic doctrine (Hayek was a third rate thinker even within context of the 'dismal science' of economics): everything can be assigned a monetary value and that which seemingly cannot is of no worth.
Biting the hand that feeds IT
