Sociology of Health & Illness

Cover image for Vol. 39 Issue 8

Edited By: Gareth Williams and Ian Rees Jones (Joint Editor-in-Chief), Davina Allen, Eva Elliott, David Hughes, and Joanna Latimer

Impact Factor: 1.89

ISI Journal Citation Reports © Ranking: 2016: 12/40 (Social Sciences Biomedical); 25/143 (Sociology); 50/157 (Public Environmental & Occupational Health)

Online ISSN: 1467-9566

Virtual Special Issue on Sociological perspectives on the internet, health and illness

Edited by Clive Seale

Announcing an investigation of the ‘new and unique medium of the internet’ Michael Hardey (1999), in the first article about the internet published in the journal, reported a study of households in the UK, recruited through email discussion groups, who were interviewed about their use of information retrieved from the internet about health and illness. This widely cited article set the parameters for much subsequent work by medical sociologists, because it related findings to an existing central concern within the discipline: the asymmetrical distribution of expertise.

Hardey suggested that the internet provided people with the means to challenge professional expertise by becoming experts themselves, saying that this new medium possessed the capacity to ‘transform the relationship between the health professions and their clients’. In this respect Hardey, too, was in tune with the generalised enthusiasm about the democratising potential of the internet that accompanied its early growth, which led to celebratory accounts of what might be achieved by groups normally in a marginal position in relation to conventional mass media, who could now have easy access not only to information posted on the web, but (through the creation of web sites) to the means of producing and disseminating their own knowledge.

As is well known, medical authorities commonly stress the need to evaluate internet sources critically in order to avoid harm, and promote schemes to ‘kitemark’ web sites which provide advice in line with current medical thinking. In part, this can be understood as a defence of the cultural authority of medicine, in parallel with the similar worries expressed by members of the medical profession when radio, film and television began to disseminate medical knowledge through soap operas like ‘Doctor Kildare’ in the early to mid twentieth century. #

The internet and everyday life

Since Hardey’s work, the journal has published a number of studies of the role played by the internet in the lives of people concerned with health and illness issues. One of the most significant and widely read of these was published in 2003 by Flis Henwood and colleagues. Unlike Hardey, these authors did not draw on a sample of existing internet users, but recruited 32 women from a family doctor practice who had recently taken or considered taking hormone replacement therapy (HRT). In interviews, many of these women indicated that they were not keen to become ‘informed patients’, preferring instead to rely on their doctors’ advice. Although almost half of the sample had used the internet, their search strategies were often less than optimal or their doctors had been reluctant to consider such information in consultations. Henwood et al concluded that there were considerable constraints to the emergence of a fully empowered internet-informed patient role.

Other papers published in the journal that have examined the place of the internet in the everyday lives of people concerned with health and illness include studies by Sarah Nettleton and colleagues (2005) and by Joëlle Kivits (2009). In the first of these, the authors examine people’s accounts of their internet use, identifying ‘rhetorics of reliability’ which people use to show why they trust some internet sources rather than others, presenting themselves as ‘sensible’ users in much the same way as medical authorities evaluate internet sources. Nettleton and colleagues draw also on Clive Seale’s (2005) account of ‘media convergence’ which argued that, in the case of cancer web sites, reliance on the filtering technology of search engines means that most users are likely to experience the internet as a source of officially sanctioned and medically approved knowledge, rather than encountering radical alternatives. Kivits (2009) describes the role played by the internet in the lives of her respondents as being that of an ‘everyday helper’, something which allows users to seek out personally tailored advice, information and even reassurance that they then integrate with knowledge and experience derived from other sources. She downplays its role as a source of ‘lay expertise’ that is likely to bring internet users into conflict with their doctors.

Thus, the journal has hosted empirical studies describing a variety of relationships with the internet and with medical expertise. The later studies modify and in some cases contradict Hardey’s early depiction of the internet as an inevitable source of challenges or alternatives to medical expertise. But other kinds of internet study published in the journal have provided support for the view that the internet has fulfilled this role.

The internet as a platform for dissent and influence

Thus Nick Fox and colleagues (2005) report the perspectives of people associated with a pro-anorexia website in resisting medical approaches and subverting pharmaceutical technologies in pursuit of weight control. Emma Rich (2006) also highlights the use of the internet by young women seeking to resist the stigma of an anorexic identity. James Gillett (2003) provides an account of internet-based media activism by people with HIV/AIDS, sometimes involving the promotion of dissenting views concerning the cause and treatment of AIDS. Pru Hobson-West (2007) includes in her data sources the websites of groups resisting childhood vaccination in her study of this social movement. Steve Kroll-Smith (2003) shows how popular media, including the internet, have been used by a variety of non-medical sources to promote the diagnostic label ‘excessive daytime sleepiness’, so that medical authorities have been obliged to recognise this as a disorder. Chris Ganchoff (2004) uses websites as well as interviews with activists from social movements associated with debates about embryonic stem cells to describe citizen participation in the construction of scientific knowledge. In their different ways, these articles all demonstrate the role of the internet in providing a platform for disseminating the ideas of health social movements, which often provide accounts of health issues that oppose those of medical authorities, or eventually succeed in extending the medical remit to new areas. One can link Kivits’ (2009) idea of internet sites as ‘everyday helpers’ to a process commonly described by social movement theorists (see, for example, the special issue of the journal on Health Social Movements (Volume 26 Issue 6, 2004)), in which personal experience is interpreted through the lens of a collective identity, access to which is provided by the internet.

Participation in internet forums

The internet is a collection of different communication formats. Websites with fixed content can be understood as sources of information that in some respects are similar to conventional print or broadcast media, with the proviso that access to the means of production of websites is easier than publication in other media. Another important communication format is the internet forum, where people post and exchange information, experience and support. Several studies published in the journal explore the dynamics of such groups.

Perhaps the most fine-grained analysis is provided by Judith Horne and Sally Wiggins (2008) who use discourse analytic methods to examine the opening posts made by people to an internet forum for ‘suicidal thoughts’. They focus on the way in which individuals present themselves as ‘genuinely suicidal’ and negotiate this with others, so that a suicidal identity is tested out in interaction with other users. Anne-Grete Sandaunet (2008) provides an account which focuses similarly on the ways in which participants in such a group (in this case, for people diagnosed with breast cancer) seek to establish a legitimate position in the group, showing how some fail to do this and therefore drop out. In the group Sandaunet studies, adopting a biomedical ‘restitution story’ appears to have been a crucial factor in determining whether participants felt they belonged, showing that the internet is by no means always a site for oppositional discourse to biomedicine. Patricia Drentea and Jennifer Moren-Cross (2005) focus on the creation of social capital by mothers communicating in another online discussion forum, showing the emotional and instrumental support thus exchanged, fostering community building and protection. Again focusing on mothers, Rebecca Schaffer and colleagues (2008) report a longitudinal ethnographic study of mothers’ use of genetic knowledge derived from the internet to understand and manage their children’s genetic disorders. These authors show how formal knowledge relates to experientially-derived knowledge, as the mothers construct their genetic citizenship.

In relation to HIV/AIDS, David Rier (2007) provides a study of HIV+ status disclosure in postings to several support groups, showing how a generalised ethic in favour of full disclosure is modified and negotiated by participants. Mark Davis and colleagues (2006) also explore the theme of disclosure of seropositivity in their study of e-dating by gay men, interviewing men about their strategies in relation to internet-based communication with regard to their own disclosure practices and their interpretation of the messages posted by others. The implications of these practices for HIV prevention are brought out.

The ready availability of research materials in the postings to internet support groups has, then, been used to considerable advantage by medical sociologists publishing in the journal.

The internet as a data source

Finally, it should be recognised that the internet is, increasingly, a source of data for research studies whose main focus is elsewhere. Steve Kroll-Smith’s (2003) study, mentioned earlier, of the promotion of the diagnostic label ‘excessive daytime sleepiness’ is a case in point: the focus of this article was not on the role played by the internet, which was treated as one media platform amongst several that contained such views. Kathryn Jones (2008) provides an analysis of the websites of health consumer groups and the pharmaceutical industry as part of her article whose primary focus is on the largely hidden nature of these links, and the implications which this has for policy makers. Susie Scott (2006) draws on website material, as well as self-help books and other sources, to understand the medicalisation of shyness in a study that bears some similarities with Kroll-Smith’s.

In Sociology of Health and Illness, then, we see a rich variety of internet health studies and a growing use of the internet as a data source for medical sociology. The journal will continue to publish contributions to this field which enhance our sociological understanding of this important medium of communication about health and illness.