Selling our health? Consequences of opening up of NHS patient records for research brings dangers and opportunities for social research

It has recently been announced that the NHS is soon to open up all of their electronic patient records to research. This means that sanctioned researchers will be able to electronically trawl all of the anonymised data records. This is likely to open up significant possibilities for research, for instance through highlighting correlations between demographics and medical conditions not yet realised. Once access to this data is opened up analysis of it is likely to be cheap, quick and meaningful. As Polly Toynbee pointed out in The Guardian the research this makes possible may well be easier and more meaningful than clinical trials.

I agree that there is great potential in this kind of research and this could be a positive move. The preoccupation in clinical research with randomised control trials (RCT) has led to some odd developments. The rhetoric of the RCT as the “gold standard” of research leads to much confusion. From my experience of teaching social research to public health students they sometimes expect social research to be judged against the same standards as RCTs. They, therefore, sometimes wish to awkwardly fit a sociological method into this framework and look on them with disdain if they do not meet these standards and they are not alone in this perspective. The kinds of data trawling which are being introduced are much more amenable to a thorough integration of sociological questions than RCTs (for instance research into health inequalities). Such forms of data analysis have an inherently sociological aspect to them as they are dealing with trends on a population level, what Emille Durkheim called “social facts”.

This development also brings health research closer to the cutting edge methods of digital sociology. This brand of sociology seeks to critique and make use of digital data which is already existing (as well as generating new data) in order to produce new insights. The more critical strands of this new digital sociology can, however, also warn us of some of the dangers. The most immediately obvious cautions we must have are of the potential for marketisation of this data. As we are now well aware this kind of data is of great value to commercial enterprises which go to great lengths to access it. Health technology and data is also commonly regarded as the new frontier for digital markets with massive investment in health apps in the laste twelve months (see here and here). This data will be an obvious target for capital accumulation and it would be much more surprising to discover that there are no companies attempting to gain access to this than to hear that they are.

Just because this is a danger does not however call for luddism from those who are concerned about such consequences. There is often signficant suspicion of technological developments and innovations from those on the left because of the possibilities they bring for capitalist exploitation. This need not be the case. Neo-liberal, and libertarian, strands of the right have simply been more enterprising and more willing to imagine the possibilities for their own ends. There have been recent calls for “accellerationism” for the left, that innovations should be embraced and moulded for their own ends. Moreover, “accellerationists” propose that capitalism is holding back development with its narrow focus on the maximisation of profit and the exploitation or development of existing markets rather than genuinely expansionist thinking.

While the potential consequences of capitalist appropriation and exploitation of this data are significant and crucial they may or may not occur. There are broader ontological issues which the emergence and analysis of this data are almost certain to bring about in one way or another and are of particular significance to sociologists. For instance, we can see the data, and the tools which will be used to analyse it, as what Evelyn Ruppert, John Law and Mike Savage have in broad terms called ‘digital devices’. Such methods of digital data collection, aggregation and analysis are ‘increasingly the very stuff of social life in many locations that are reworking, mediating, mobilizing, materializing and intensifying social and other relations’ (Ruppert et al 2013: 24). In short the ways in which we live, experience and analyse (sociologically and otherwise) our lives are affected by these ‘digital devices’. It has long been known that categories designed for analysing populations and, relations theorised between members of such populations, tend to seep into everyday understanding and affect social behaviours and identities. This has, for instance, been clearly demonstrated by Nikolas Rose in his work on psychiatric diagnoses and the “psy sciences” in general.

The intent may or may not be a benign interest in the generation of better research but the consequences will be much farther reaching.

Ruppert, E., Law, J. and Savage, M. (2013) ‘Reassembling Social Science Methods: The Challenge of Digital Devices’ Theory, Culture and Society 30(4) 22-46.