Towards a critical sociology of digital health technologies

A recent research interest of mine is the emergence of ‘digital health’ (otherwise known as Health 2.0, Medicine 2.0, eHealth or mHealth) as central to healthcare and public health policies in developed countries. Digital health technologies include using mobile wireless devices and social media to gather data on health-related behaviours or to encourage people to take up health promoting behaviours, using Web 2.0 devices to seek out information on health-related matters and to contribute to this information, telemedicine, digital medical records and disease-monitoring systems.

There are now many articles in the news media and medical and public health literature that enthusiastically promote digital health as ‘revolutionary’ and ‘disruptive’ to traditional approaches to healthcare and public health. As a sociologist, I have sought to interrogate the assumptions underlying discourses on digital health technologies and to identify the social, cultural and political dimensions of the digital health phenomenon. I have recently written several academic pieces about digital health technologies, as well as a number of blog posts.

Two articles have focused on their use as part of health promotion, quantifying the body and self-tracking (see here and here). Another article looks at the concept of what I have termed ‘the digitally engaged patient’ in relation to the employment of digital technologies in recent telemedicine initiatives . I have also written about the commodification of patient experience data uploaded to patient support websites and the use of Donna Haraway’s cyborg theory to theorise digital health. The most recent piece returns to the subject of what I call ‘digitised health promotion’.

One of my central arguments is that despite the representation of technologies as inert, neutral objects participating in the collection of data in the interests of health promotion and medical self-care, from a critical perspective such objects may be viewed as actively shaping the subjects/bodies of those who use them. Technologies discipline and order bodies in certain ways, just as bodies discipline and order technologies. They are not politically neutral, but rather are implicated in a dense web of power relations. Using medical and other technologies to peer inside the body is part of a mentality that assumes that more information about the body is always better.

There are a number of central themes that come together in the critical sociology of digital health phenomenon. These include examination of the technologies themselves that are part of Web 2.0 and the Internet of Things, including ubiquitous computing (devices that are mobile and wireless), wearable devices and embedded sensors in devices, as well as the ‘big data’ that are produced from digital technologies. Other themes are the emphasis on personal responsibility for self-care and self-monitoring in telemedical and health promotion programs, the withdrawal of the state from alleviating socioeconomic disadvantage and the promise of control over the body, disease and expenditure that is regularly articulated in discourses on digital technologies. Also important are the contributions of the discourse of ‘healthism’, or the assumption that good health should be privileged over other priorities in people’s lives, and the lure of techno-utopian and data-utopian discourses generally that promote digital technologies as the means by which good health and financial savings may be achieved. Surveillance, whether voluntary, imposed or coercive, is another central dimension of using the new digital health technologies.

Now that computers are wearable upon and can even be inserted into the body or ingested as pills, and are used as part of medical care and preventive health strategies, a new set of possibilities and limitations have been generated in relation to the ways that we think about and use these technologies. I argue that digital health discourses work to draw attention from the social determinants of health and support victim-blaming of those who are ill or viewed as not successfully managing health risks. They promote the myth that ‘clean’, ‘controlled’ technologies allow containment of the ‘messiness’ of human disease and bodily disorder.

Furthermore, digital health technologies discipline bodies in certain ways and configure a set of obligations concerning acting upon the data that they generate. Privacy and discrimination issues also need to be identified and acknowledged, given that digital monitoring devices potentially allow healthcare providers, health promoters, employers and health insurance companies to gain access to data on users’ bodily functions and activities in fine-grained detail. Greater attention needs to be paid to the moral, political and ethical dimensions of the digital health phenomenon.

Opening up your research: self-archiving for sociologists

I have been reading more and more about the virtues of making one’s academic research available on open access sites (also known as ‘self-archiving’) and the best ways of doing this. There are several reasons why this is a good idea. Open access publishing makes your research visible by removing it from behind paywalls and rendering it accessible to anyone with an internet connection. An increasing number of research funding bodies are now expecting this as part of their requirements. It has been demonstrated that uploading your material to open access services increases academic citations of your work, and therefore contributes to its impact.

Sociologists in general are way behind academics in some other disciplines in their use of any kind of digital technologies as part of their research and scholarship. Those of us using social and other digital media, therefore, have fewer colleagues with whom to interact. A critical mass of ‘digitised sociologists’ has yet to be generated. In failing to use open access archiving, sociologists are missing out on sharing their work, gaining a greater audience and citation numbers, achieving engagement with those who do not have access to journal collections and accessing other sociologists’ research.

As part of my own attempts to work towards open access of my writing and research, I have recently been experimenting with different ways of achieving this. I have uploaded documents to the following open access archiving services: my institution’s e-repository, Academia.edu and ResearchGate. I did look into the Social Science Network as well, as its title suggests that it might embrace sociological writing. Having investigated this service and uploaded a few papers, however, it is clear that this service is far more oriented towards economics, business and management, legal studies, cognitive science and the humanities, so I have not pursued this option. I also investigated Figshare, but this appears to be used predominantly by scientists. Having experimented with uploading some papers to ResearchGate, the same appears to be true of this platform. Until this situation changes, I can’t see the Social Science Network, Figshare or ResearchGate as benefiting sociologists to any great extent. Academia.edu, by contrast, has far more sociologist members, and therefore at the moment provides many more opportunities to interact with other sociologists.

My experience suggests that combining the use of my university e-repository and Academia.edu is the most effective form of self-archiving for sociologists. University e-repositories are functional rather than fancy-looking, and do not provide any type of social networking functions. However they have been carefully established to capture all the metadata required to facilitate access by search engines (title, place of publication, date, what type of article and so on), constitute a permanent and secure space in which to deposit papers, generate a consistent hyperlink to the publications and are overseen and managed by university staff members.

As depositing my documents into the e-repository produces a stable URL that I can then easily distribute via blog posts or tweets, it is very easy to publicise them. I can insert this link into my Academia.edu publications page, thus directing readers directly to the e-repository archive if they wish to view or download the publication, as well as embed it in my university profile page and so on.

Academia.edu, for its part, provides features that university e-repositories do not. It includes social networking functions, offering the opportunity to follow other individual researchers and research topics and for others to follow you, and also facilitates discussions with other members. I therefore recommend using both services in conjunction with each other to achieve maximum exposure, as well as employing social media tools such as Twitter, blogs and Facebook to publicise the material that you have uploaded.

One drawback of self-archiving is that one needs to be conversant with what can be quite complex copyright legislation. There are no standard copyright agreements across academic journal and book publishers in terms of self-archiving, and these can vary quite widely. Most journals and book publishers in sociology never allow authors to upload the final, published version of the document as it appears in the journal/book itself (often called the ‘publisher’s version’). Most do allow authors to self-archive the author’s own postprint version (the final version formatted by the author in a word-processed document that was accepted for publication by the journal following the review and revision process). Preprints (your version of a piece before it is peer-reviewed) can generally be uploaded straight away as the author holds the copyright for this material. However the uploading of postprints often has to wait for lengthy embargo periods, which in the social sciences tends to be 12–18 months. Some book publishers even require a three-year embargo period following publication of the final edited version for book chapters in edited collections. The copyright agreements of each individual journal or book publisher need to be checked when self-archiving, particularly in relation to restrictions around postprint versions.

According to the Budapest Open Access Initiative website (an extremely comprehensive source of information about open access and self-archiving), researchers should be self-archiving articles at both preprint and postprint stages of publication. Publishing on open access services is a great way to publish pieces of writing that would otherwise have languished on your computer hard drive, such as seminar or conference papers. It has been contended that writing book chapters, in particular, may be a waste of effort, as they are often not accessible to search engines and therefore difficult for potential readers to find. Publishing an author’s version on an open access service will overcome this.

I have found that a working paper published on an e-repository can be an effective choice for research that you are keen to publish quickly because it is particularly important or topical, rather than waiting the many months that the peer-review and standard publication process involves. This kind of pre-submission publication also allows for any comments or feedback from others to be incorporated (a kind of pre-publication review process) before finalising the piece in its required journal article or book chapter format. As well as pieces of a standard article/book chapter length, I have published quite short pieces of writing such as conference papers and collections of blog posts gathered under a single topic (e.g. collections on fat politics and digital sociology).

Two last pieces of advice. First, try to make sure that all the papers you upload are of ‘publication standard’: polished, carefully proof-read and attractively formatted. Second, include a statement at the beginning of each paper indicating how it should be cited. Including this statement, or at least enough information so that people can cite the document is very important if, indeed, you want your publications to be cited. I have come across several pieces of other people’s writing that they have uploaded to digital repositories where the document does not state even the year of publication, let alone other details, so it cannot be cited.

Further reading: The Academic’s Guide to Self-Publishing discusses self-archiving and lots more.