On fourth of July 2016 I hosted an event at Leeds Beckett University called Digital Health/Digital Capitalism (here is a Storify of tweets from the dayhere is a Storify of tweets from the day). The purpose of this was to get some people together to talk about some issues which I am interested in specifically the ways in which the use of digital devices and data in health and wellness is impacting on our lives and how this is intersecting with the developments in digital capitalism.
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Both of these terms (digital health and digital capitalism) are contested and some people (including at least one of my plenary speakers!) would oppose one or both of these concepts. Nevertheless, I believe that they are useful starting points for understanding recent and ongoing developments in health, the economy and society. The event was, I think, a fantastic day due to some really great and diverse speakers and a really engaged collection of participating delegates.
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What I would like to do in this post is to summarise some things discussed (but by no means all) in the papers given and offer some suggestion of the kind of conversation that we had. Of course, it should be kept in mind that these are my personal reflections and some of the things which I found personally interesting rather than being a complete, representative or necessarily accurate portrayal of anything anyone said on the day.
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The event started with a paper by one of our plenary speakers Nick Fox who takes a critical slant on these two key issues but also tries to offer a positive way forward with them. His particular focus is on personal medical technologies and he approaches them through a New Materialist analysis. I have discussed some aspects of New Materialism previously but in a nutshell this is an approach to understanding the interaction between human and nonhuman to forces receipts to subvert the anthropocentric privileging of human action and intentionality.
The assumption of this theoretical approach is that technologies, animals and what we might consider to be inanimate objects have capacities which, when they are brought together in particular configurations, create new capacities. So, for instance an “assemblage” of human and mobile phone has different capacities to a human and landline phone.
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Central to Nick’s approach is to focus on the material capacities of digital technologies in specific contexts so he sees this as a break from the poststructuralist focus on text and discourses with the move towards materialities. So rather than addressing agency he is interested in capacity or affect. Nick therefore seeks to try to understand how personal medical technologies form “assemblages” of people, technologies, policies, institutions, et cetera. In particular he is interested in the resistant potential of connected bodies and social formations enabled by the introduction of personal medical technologies.
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Tamar Sharon spoke next and questioned why non-research companies such as Google are increasing interested in medical research. She looked at the context in which digital health apps are increasingly framed as a tool to enhance individual health and research. Tamar suggested that the new power asymmetries that are being created in this context have not had the attention of the more techno utopianist discourses. Part of this is that randomised control trials and other more traditional methods of research are being positioned as out of date, small and slow compared to the type of research Google and others are capable of. This ignores the fact that big data analysis has many drawbacks.
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Not least of these is that the quality of data generated by wearables and other kind of ambient data is often of low quality. Similarly the samples are skewed, for instance iPhone users tend to be younger, wealthier, better educated and whiter than the general population. Tamar suggested that there is an assumption that limited inferential value will be offset by the enormous size of the data. However, this flies in the face of traditional methods of data generation and analysis in the research community. We have to wonder who is driving this new era of public-private collaboration in research.
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David Hill gave his talk on the potential of autonomy through automation. The crux of his position is that we need the potential for care of the self before we can hope to look after others. He warned of the tendency of digital technologies to instil the rhythms of communicative capitalism. By this he means (I think) that attention economies developed through social and digital media encourages us to engage in particular kinds of ways. Facebook and Twitter want us to still be constantly engaged and active with them so we are always be producing new content to keep others engaged in order to and create buzz and stimulation.
David drew on Emmanuel Levinas to suggest that it only by “being at home” that we can be hospitable to others. But that our ability to feel “at home” in ourselves is damaged by the destruction of “primary narcissism”, that is, our ability to take of ourselves. This is because in digital capitalism care is only deemed important if it is productive.
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Joseph Savirithmu discussed some of the ontological and epistemological issues of health data starting from the assumption that computer systems have the capacity to capture and represent reality. From a legal perspective he addressed questions of what kind of privacy we expect and what fits within our current social system. In current legislation it is stated that data subjects should have the right not to be subjected to automated processes. Is this currently being upheld?
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He suggested that we need to make life scientists more aware of the problems of using Google and other big data processes in research. Linking with Tamar’s presentation he suggested that the benefits of these kinds of partnerships can often seem to outweigh the potential negatives but much more caution is needed.
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Joseph proposed that there may be some aspects of machine learning which could be useful for enabling a more ethical approach to health data. For instance there might be ways in which privacy could be designed into systems. Perhaps there could be automated “red flags” to signal data leakages.
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Christel De Maeyer spoke about her research into sleep tracking. She unpicked the ways in which sleep has been incorporated into ideas around productivity with figures such as Ariana Huffington being evangelical for sleep which she sees as the ultimate performance enhancer.
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Christel described how in most cases technology is introduced to us as an experiment and the main goal is to create new habits. But this tends to impact on people in different ways. For instance women often feel more controlled and stressed by such interventions but they often also feel more motivated. Is there a a correlation between being controlled stressed and motivated?. Crystal also proposed some questions about how we can assess who defines the “role models” in tracking apps.
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Lynne Pettinger, Ewen Speed, Andrew Goffey discussed the Health and Social Care Act 2012 and how it’s digital strategy promised “integrated care collaborative competition” but actually puts collaborating organisations in competition. The act effectively pushed hospitals into giving up control with the strategy justified on an ethical basis which conflates better care with saving money. Competition, they suggested, creates a “silo” mentality making collaboration difficult.
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Federica Lucivero discussed her analysis of digital patient records. She said that access to records is seen as a necessary condition of patient empowerment. However, the meaning of patient records has changed. Traditionally medical records were seen as a means to keep track of doctors activities in case of legislation but now they’ve been opened up to new readers for him they were fiercely not intended. This means that there is arguably less honesty in records as I was writing you are aware that patients will read them and that they need to manage the interpretations of patients.
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In the final plenary session Graham Scambler took a critical view of the whole enterprise. He claimed that “the digital” is often over emphasised. In particular, he suggested that “financial capitalism” is more significant than “digital” and that the current phase is more a continuation of longer trends. Graham sees digitization as part of a broader “postmodernization” of culture which often neuters resistance through relativism. This is particularly problematic now because social class seems to be less important in identity formation than in the past but is objectively more influential than in the post-war period (for instance).
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The digital era, including digital health, has enabled a further modelling of us as consumers enabling profit making, surveillance and creating a new passivity. It is here that Graham sees the importance of sociology. In particular he considers to strands of sociology to be important. Foresight sociology engages with the world critically and imagines different futures is vital for demonstrating how things can be different. This is something which digital sociology is particularly good at, he said, and from which mainstream sociology can learn. Action sociology is directed towards particular goals and enables resistance to the ideologies which are highlighted elsewhere in the discipline.
This Is Not a Sociology Blog 