Medicine, Methods, & Mobile Devices

by Professor Andy Miah & Dr Emma Rich

Editorial for Salute e Soceità, the Italian Journal of Sociology of Health. The published version is in Italian.

Despite having developed for over a decade, the importance and complexity of studying what happens in digital health environments has yet to be fully appreciated within the sociology of health, particularly in its capacity to transform the methodological parameters of research. Yet, it is incumbent upon the scholarly community to develop a rigorous and responsive methodological approach to such inquiries, since our understanding of health behaviour and health care is increasingly inextricable from the proliferation of new digital systems, which have led to new configurations of communities engaged by health issues and new ways of providing patient care (Miah & Rich 2008). Indeed, the significance and complexity of this shift cannot be underestimated. As Hine (2005:1) notes, the Internet poses ‘a significant challenge for our understanding of research methods.’ These developments make it timely for Salute e Soceità to publish a special issue on digital health, especially as there has been rapid development in digital health innovations, progressing from consumption of content to greater user interaction and production. In this sense, whilst the Internet marked a significant point in the sociology of health, the nuances of digital health are now much more varied with the integration of mobility and the new sharing economy of digital culture. Furthermore, the tools by which researchers can analyse what takes place in digital health spaces have matured significantly.

Thus, from the management of health records to the sharing of health advice on mobile apps, today’s sociologies of health are now populated by new kinds of data and interface that transforms health related transactions and reveals how people negotiate their health in a variety of technological systems. In various medical discourses, it is widely recognised that these new web based environments are used increasingly to access information about health, illness and medicine. Furthermore, the number of users engaged by digital health has grown exponentially. In 2006, it was reported that 80% of all adult Internet users in the USA (over 113 million individuals) have searched for health information online (Fox, 2006). By 2012, 31% of all mobile phone users in the USA looked up health information on their phone, while 1 in 5 smartphone users has a health app installed on their phone (Fox & Duggan 2012). In 2012 there were over 13,000 ‘health and wellness’ apps available via Apple’s App store alone. Furthermore, exercise, body weight and dieting apps are amongst the most popular downloaded health apps (Fox and Duggan, 2013) and mobile phone subscriptions worldwide reached nearly 7 billion in 2013 (Chan, 2013). It is no surprise, therefore, that sociologists are turning to studies of health interactions in digital environments, as their use becomes a more prominent feature of everyday life.

However, researchers are still exploring the appropriate mechanisms and methods through which to analyse what takes place. Indeed, whilst there is considerable will, excitement, and interest about the potential for digital health sociology, there is also ‘considerable anxiety’ (Hine, 2005) about the applicability of traditional research methods to critical explorations of digital health environments. This anxiety is further complicated by the wider concerns about the rise of digital health. For instance, Bauer (2004: 87) suggests that online physician-patient interactions will fail to achieve a suitable level of ‘interconnectedness’ in an online world, thus interfering with ‘the development of physician compassion and patient trust’ (ibid: 89). Bauer considers that this raises ethical issues, since it ‘undermines the basic goal of medicine – the advancement of patient health and well-being’ (ibid). Alternatively, Colliste (2002) notes that it is critical to understand how administering medicine via the Internet challenges conventional assumptions about patient autonomy. So understood, the use of digital technology to perform health care assumes a specific kind of relationship between doctor and patient, which Colliste (2002: 122) describes as the ‘engineering-model’.

As these new digital practices of health have developed, questions about the adequacy of current methodological approaches have come to the fore. Discussions have drawn attention to the question of whether sociology of digital health as a phenomena/field is in need of new methodological approaches, or whether conventional approaches can simply be adapted to digital communities. Yet, rather than seeking to define how particular methodologies will address these anxieties and attempting to arrive at some ontological and epistemological consensus within sociology of digital health, perhaps scholars need a more contextualised and situated response. This is because we cannot know in advance what the methodological challenges of digitality will be; firstly because of the rate of socio-technological progress and secondly because of the fragmented and dispersed nature of ‘e-scaped’ medicine (Nettleton and Burrows, 2003).

This challenge is made apparent by the nuances arising in the series of papers within this special issue. Collectively, they do not present an exhaustive range of methodological approaches or epistemological issues. Rather, they point towards a range of applications currently employed and some of the situated legal, social and epistemological questions that are confronting social researchers exploring health and illness online. In so doing, they draw attention to the many questions that arise when thinking about how to research digital health communities. It is crucial that researchers begin to answer some of these questions, not least because so much is at stake around how people engage with health online. So many debates about digital health have been framed by questions of regulation and control and it is important for researchers to establish robust systems of analysis that offer comparability and depth of insight despite the changing character of the web. In a similar way to how the communication of health information online can be misread, the failure to determine appropriate methodological principles for researching digital health can also lead to spurious claims, which have only limited utility when it comes to providing policy guidance or just simply an understanding of what is taking place online.

There are a number of key themes that come out of these papers, which serve as a framework for thinking about methodological priorities in digital health sociology. First, it is necessary for scholars to make sense of how society takes on new meanings and operations in remote communities. For instance, do people relate to each other differently online, in ways that may compromise the ontological assumptions we make about what communities mean? Equally, does the relative anonymity of online spaces mean researchers must develop alternative theoretical understandings of identity or authenticity? Second, one may also learn from the debates about what Livingstone and Helsper (2007) describe as ‘a continuum of digital inclusion’ and scrutinize how research online engages a broad demographic spread when undertaking sampling. While access to mobile health is growing, it is necessary also to be vigilant of the populations that are still absent from these environments. Third, one may also consider the interpretation of data provided by social media agencies and other organizations who are sourcing vast quantities of information and pushing out findings from this.

While academics may hesitate before relying on third party data, there may be merit in developing a distinct methodological approach to handling data in the ‘era of big health data’ (Swann, 2012), especially when it is made freely available. Closely related to this is the merit of considering the utilization of freely available research tools, which have the added facility of being able to share more easily, making research capture a more collaborative endeavour. For instance, the open and free platform AcademicTorrent.com offers access to datasets, which anybody can download and utilize in their research. The speed at which new analytical tools emerge also raises questions about professional development and training for researchers, which may be among the most crucial considerations. After all, if scholars are using analytic platforms that are out of date or inferior to new crowd sourced, free, and open software, then the impact and accuracy of their findings may be far inferior to those generated by other expert communities.

One important focus of this special issue is practical ethical issues to consider in the context of digital health environments. For instance, how do people negotiate their online presence as either a private or public space, and how to researchers endeavour to protect privacy when so much data is public and searchable? Quoting a tweet from a user group may not be possible to do while also protecting anonymity, since that tweet may be searchable. Alternatively, the process of obtaining consent from research informants may require a different approach in digital health environments. Such questions point to the contextual and processual nature of issues like ‘anonymity’ and the accompanying criteria we used to judge this.

In general, the capacity to protect informants in the course of digital health sociology may be less achievable for the researcher, requiring different approaches and expertise from institutional ethical committees when approving research protocols. Indeed, in many cases, the genuine identity of informants may not even be known. Equally, the global nature of the web may require a more universal ethical model for research, which is also sensitive to differing legal principles and precedents. For instance, researchers may need to consider the implications of publishing research that draws data from environments, where their access is enabled by their own membership, as there may be legal conditions around their access which place limits on their activity within it. This is especially important to take on board, since many platforms aim to sell the data generated by users and findings from it in order to function. With research on health, this may be additionally complicated given the sensitivity of the data sought.

In these respects, whilst there are crucial differences between ‘netnographies’ (Kovinets 2010) of health communities online and offline sociology of health, which requires careful consideration, there are also differences to consider across the broad spectrum of digital platforms which would not be adequately captured by a methodological distinction grounded in dichotomous assumptions about life on or offline virtual. The papers in this special issue speak to a range of salient issues arising through the utilisation of different platforms and devices such as blog, wearable technologies, websites, social media spaces, directing our attention to their specific challenges.

Critical approaches and analyses of health bring to the fore judgement criteria that implore us to ask questions about how research into digital health benefits the communities it studies. Arguably, the more direct means of communication with informants allows a different standard of best practice for undertaking activities that can feed into the communities that are studied. Thus, researchers must think about how else they may relate their insights to digital communities after their research has concluded. Rupert et al (2013: 22) recommend an approach that is ‘alive to the ways in which digital devices are simultaneously shaped by social worlds, and can in turn become agents that shape those worlds’. In this vein, there is a need for research to explore individual experiences of mobile digital technologies, particular in terms of how they contribute to ‘embodiment, selfhood and social relationships’ (Lupton, 2012: 229).

The papers within this issue similarly concern themselves with the bidirectional nature of digital health sociology by exploring ‘the implications of digital devices and data for reassembling social science methods or […] social science apparatus’. In sum, it is likely that the sociology of health will become further focused on digital research methods in the future, as more of our interactions with health and health systems are played out online. Indeed, the coming ‘Internet of Things’ urges researchers to think about the multiple connectivities that will become constitutive of society in the future, as more and more systems speak to each other via digital interfaces.

In conclusion, digital health technologies provide all kinds of new ways for people to engage with health, for instance, through biometric monitoring that is integrated within devices. The flash from a mobile phone cameras can be used to monitor heart rate, any number of exercise apps allow people to monitor their physical activity, and all of these platforms collect data about these user communities. Predicated on the rise of the ‘information age’ (Castells, 2010), these shifts have also been accompanied by a growing utilization of digital tools and new methods within the sociology of health, which is beginning to allow researchers to study these phenomena in ways that will likely change the sociology of health research in profound ways.

References

Bauer (2004) Cybermedicine and the moral integrity of the physician–patient relationship, Ethics and Information Technology, 6(2), 83–91.

Castells, M. (2010) The Rise of the Networked Society: The Information age: Economy, Society and Culture. Oxford, Wiley Blackwell. Vol 1. 2nd Edition.

Chan, M. (2013) Mobile phones and the good life: Examining the relationships among mobile use, social capital and subjective well-being, New Media & Society, Vol XX(X) 1 –18.

Colliste (2002) The Internet doctor and medical ethics: Ethical implications of the introduction of the Internet into medical encounters, Medicine, Health Care and Philosophy 5: 121–125, 2002

Fox, S. (2006) Online Health Search 2006, Pew Internet & American Life Project, Available Online: http://www.pewinternet.org/files/old-media/Files/Reports/2006/PIP_Online_Health_2006.pdf.pdf [Last Accessed: 20 April, 2014]

Fox, S. & Duggan, M. (2012) Mobile Health 2012, Pew Internet & American Life Project, Available Online: http://www.pewinternet.org/files/old-media//Files/Reports/2012/PIP_MobileHealth2012_FINAL.pdf [Last Accessed: 19 April 2014]

Hine, C. (2005) Virtual methods and the sociology of Cyber-Social-Scientific knowledge, in Hine, C. (Ed.) Virtual methods: issues in social research on the internet. Oxford. Berg. pp.1–13.

Kozinets, R.V. (2002) The Field Behind the Screen: Using Netnography for Marketing Research in Online Communities. Journal of Marketing Research: February 2002, Vol. 39, No. 1, pp. 61–72.

Lupton, D. (2012) M-health and health promotion: The digital cyborg and surveillance society. Social Theory and Health. 10, 229–244.

Livingstone, S. and Helsper, E. (2007) Gradations in digital inclusion: Children, young people and the digital divide. New Media and Society 9(4): 671–696

Miah A. & Rich, E. (2008) The Medicalization of Cyberspace. London & New York: Routledge.

Nettleton, S., & Burrows, R. (2003). E-scaped medicine? Information, reflexivity and health. Critical Social Policy, 23(2), 165–185

Rupert, E., Law, J., and Savage, M. (2013) Reassembling social science methods: the challenge of digital devices. Theory, Culture and Society: Special Issues on the Social Life of Methods. 30(4): 22–46.

Swan, M. (2012) Health 2050: the realization of personalized medicine through crowdsourcing, the Quantified Self, and the participatory biocitizen, Journal of Personalized Medicine, 2: 93–118.

Professor Andy Miah is Chair in Science Communication & Digital Media, University of Salford. Email@andymiah.net Follow on Twitter @andymiah

Dr Emma Rich is Senior Lecturer in Physical Cultural Studies at the University of Bath, E.Rich@bath.ac.uk Follow on Twitter @EmmaRich45

Chair in Science Communication & Future Media @SalfordUni / written 4 Washington Post, Wired + found on CNN, BBC Newsnight, TEDx #posthuman

Chair in Science Communication & Future Media @SalfordUni / written 4 Washington Post, Wired + found on CNN, BBC Newsnight, TEDx #posthuman