In this post I will discuss the impact of the collection and analysis of “big data”; specifically health data. Here we will see data as a technology in itself and consider the forms of generating these data which help to create new kinds of sociotechnical assemblages and “enframe” our health, bodies and relationships with one another in particular ways. This digitisation of health has enabled new kinds of treatments and approaches to public health but also allowed greater encroachment of commercial enterprises onto private bases and intimate parts of our lives. It has also allowed for new and more fine-grained biopolitical governing and created new “technologies of the self” and encouraged particular kinds of “care of the self”.
There has been a proliferation of data in recent years due to the use and availability of digital devices in government, commercial and private life. Most of the datasets we might consider to be “big data” are ones which are routinely collected and seemingly the byproduct of other practices but are increasingly the main focus of interventions.
The major corporations of digital capitalism are keen to get access to our health data. For instance, the Apple “Health” app is built into their iPhone. This enables people to enter their details and track aspects of their health and activity via other apps or connected devices all to be stored centrally by the phone and connect to their electronic medical records. Their aim is that the iPhone will be the central organiser for all aspects of health.
Google have a similar health system, Google Fit, but are also trying to get direct access to large scale health data. Google courted controversy when they negotiated access to 1.6 million peoples’ health records in a deal with the Royal Free NHS Foundation Trust in London. Google pledged to develop an app for the NHS called Streams which would track patients’ symptoms and send alerts to doctors through the app. As part of the deal Google were able to access these health records (including sensitive information such as HIV diagnoses) to feed their artificial intelligence system DeepMind. The way in which this deal was conducted was deemed to be illegal by the Information Commissioner’s Office.
Google are also developing a large scale study called “Project Baseline” the aim of which is to identify “what it means to be healthy” by analysing data taken from their devices. So this fundamental picture of health would not only be based on a people who happen to be Android users but also filtered through a commercial body who are likely to develop such research with an eye on profits rather than simply public good or scientific insights.
What we also see here is a an attempt to exploit the value of the vital, physical data of the population in a similar way to extraction of value from genetic data discussed in the previous post.
The use of data generated from such devices is attractive to researchers because it can be relatively easy and cheap to access and on a scale which might otherwise be impossible. But in order for researchers to get access to these data they need to do some kind of deal with corporations like Google. Also, the users of such devices are not representative of the population as a whole.
As Tamar Sharon has shown, these data are not collected in scientific conditions, they are often self-reported and if automatically generated (such as step counts or heart-rate) their accuracy is highly questionable when generated by phones, fitness trackers and smart watches. Such data are also likely to be demographically skewed as iPhone users tend to be younger, more highly educated and wealthier than other smartphone users and there are much fewer users in poorer countries. Because of their control of digital devices and their vast funds to invest these companies are now starting to influence the general direction of medical and health research.
One of the digital health developments which have gained the most public interest are self-tracking devices and what is sometimes referred to as “Quantified Self”. Most smartphones can now track steps and use GPS to map movements and many phones do this by default unless this functionality is turned off by the user. There has been a huge uptake in fitness trackers such as Fitbits and an increasing use of smart watches such as the Apple Watch which can track many more aspects of health and activity (such as heartrate and sleep patterns) and tend to generate more data because they are (almost) always connected to the body.
These devices and apps have been feted by some people for their potential to encourage more activity and healthier practices through tracking activity, presenting this back to people in the form of statistics, and encouraging particular practices through “nudges”.
Deborah Lupton, one of the most prolific and influential scholars writing on self-tracking, has suggested that it encourages a particular kind of reflexive approach to the self. It creates a “data double”, or a representation of the user as a representation in self-tracked data. This representation is based on data tracked from real activities and bodily measurements but is filtered through a particular lens. Users are presented with daily or weekly goals and placed into databases to be compared with others, simply by presenting someone with their activity in quantified form encourages reflection on it and self analysis.
We can see this as a technology of the self in the way in which Foucault discussed it as it is a method of revealing a truth about us which encourages particular ethical reflection on self (e.g. I’m not exercising enough, eating the wrong kind of food, not burning enough calories, etc) and can be used as a tool of governing the self. Related to this we can see it as encouraging a particular kind of neoliberal entrepreneurialism as it seems to encourage people (or at least those who tend to be deemed to be successful self trackers) are those who are constantly monitoring and improving, pushing themselves work harder produce more outputs and the more successful than their competitors. In this sense the ideal subject of quantified self seems to be quite similar to that expressed as the “entrepreneurial self”.
This kind of perspective sees the person who is most likely to be successful in a contemporary capitalist economy as someone who is always working on themselves as a project, seeking to maximise their potential and building their “brand” by presenting a successful self which is circulated on social media (or ironies) with demonstrations of this success in the form of statistics on their exercise performance and GPS maps of their runs.
This entrepreneurial self which is perhaps encouraged by self-tracking is also one which would be consistent with the strategies of neoliberal biopolitical governing as we discussed in the lecture on biopolitics. Several scholars have analysed self tracking from this perspective and positioned it as a means of governing our bodies and behaviour through disciplining us through these technologies.
Deborah Lupton in particular has suggested that these kinds of technologies are emerging at a time when public health budgets are decreasing and governments are entering into public private partnerships and trying to find ways of achieving reductions in spending while also improving health. Self-tracking systems would seem to be a potentially useful way of encouraging individuals to take responsibility for themselves and to suggest that if they fail to live a healthy life they have been provided with the encouragement to do so. Ultimately if we fail it is our responsibility for not following their advice and it is seen as our choice to engage or not.
In the next post I will look at some of the ways in which technologies are being used in workplaces to not only control our bodies but also capture the productive potential of our minds.