Users: practices, perspectives and consequences

Thus far the research that has been discussed involves utilising online content as a data source, to explore information reliability, discourses around health and illness, users’ interactions around health issues, or the internet as a potential site for health intervention. Further research explores users’ perspectives on online information seeking and the related issues of negotiating reliability, health knowledge construction, user empowerment and relationships with health professionals.

With quality and accuracy an over-riding concern of much of the research discussed so far, a considerable body of literature on how people of all ages access and evaluate online health information has developed. The ‘concerned’ perspective (Nettleton et al., 2005), associated with a discourse of ‘reliability’ (Conrad and Stults, 2010), inherent in much of the early quality and reliability assessment research, draws attention to the prospect of users’ vulnerability to misinformation on the internet. A number of studies explore internet users’ practices of health-information seeking generally. One study proposes users who find unreliable information could be ill-equipped to assess and interpret it (Cline and Haynes, 2001) and another indicates gaps in key areas of information and low level of readability could prove challenging for users (Berland et al., 2001). Similarly, Gray et al.’s (2005a) focus group study of young people in the UK and US explored literacy levels through online engagement with health information. While the findings of this study suggest young people’s sophisticated internet skills, they also point to shortcomings in abilities to locate, appraise and use online health information. Research has also provided insight into the processes by which people search and evaluate health information online. Eysenbach and Köhler’s (2002) observational study found that while consumers indicated the importance of noting the source of medical information, in practice few checked this rigorously. These

37 studies suggest that while there is a wealth of information available online, users’

skills may not always be sophisticated enough to detect misinformation.

Further studies go beyond characterising users’ online skills and focus on the range of online practices and their offline contexts. Nettleton and colleagues (2004) study of “health e-types” draws on qualitative interviews with parents of children with chronic diseases to construct a typology of users’ practices. They conclude that this range of users’ practices, rather than being determined by social position, is nuanced, embedded in everyday experience and contextually specific.

Typologies of users’ practices have yet to be developed in relation to health information and social media, and given recent characterisations of “cultures of the internet” provided by Dutton and Blank (2013), perhaps these could be usefully re-examined.

Criticism of studies which construct the user/patient/‘lay’ public as a passive, and perhaps vulnerable, actor in online engagement with health-related content (Lewis, 2006b) has led to research which interrogates this notion. Nettleton and colleagues (2005) took this approach in their study of people’s rhetoric around health information seeking. They found that participants regularly referred to the risks associated with information reliability online and portrayed themselves as cautious and experienced in gauging reliability when engaging with online information.

This suggestion has much in common with the approach of Ziebland and colleagues (2004) (amongst others) who conceive of the internet as an everyday resource, important for risk negotiation but not as a risk-laden environment in itself. Shifting emphasis on the internet, from a site of health risk to a resource for reflexivity, indicates the movement of research towards a focus on the user.

A number of studies have explored the idea of the internet as informing, and in some cases emancipating, the user by exposure to health information and medical discourse to which they would otherwise have limited access (Henwood et al., 2003, Fox et al., 2005, Nettleton et al., 2005, Lewis, 2006a, Kivits, 2009). These studies, explore the model of the ‘reflexive consumer’ (Giddens, 1991, Beck, 1992b) using the internet to access expert knowledge to inform critical and rational

38 decision-making. Nettleton and colleagues (2005), Fox and colleagues (2005) and Kivits (2009) suggest that the internet provides a site for facilitating individuals’

emergence as what has been variously termed a ‘reflexive health consumer’, ‘lay expert’ or ‘informed patient’. All of these terms convey an image of a citizen who takes responsibility for self-monitoring of health and engages with expert medical knowledge. Adams (2011) attempts to address the “political dimension of reflexivity” in relation to health and the internet, by exploring the increasing opportunities for individuals to participate and engage online to give feedback or raise questions about health policy and practice. She suggests:

Mechanisms and spaces are created where patients can order their own information, and – during treatment or after a medical encounter – disclose their experiences with care services to others. Website users become information producers, changing their current roles from message recipients to message senders, and creating room for new information users to emerge (p. 1070).

Like TripAdvisor and Amazon reviews, users providing feedback on particular health services or policies, providing approval and disapproval ratings, acts as a means of

‘crowdsourcing’ information. The use of this secondary, aggregated information, made possible though social media technologies, is a further resource for reflexive consumption.

However, some have noted that the availability of a plethora of information through online sources can place pressure on individuals to enact the ‘empowered’

or ‘expert’ patient role (Ziebland, 2004). Indeed, Fox (2005) cautions that the entire notion might be somewhat constraining. She suggests that since online medical discourse and the activities of users are, for the most part, concordant with the biomedical model of health, alternative modes of lay expertise are less prominent online. Further qualifications to the emergence of ‘reflexive health consumers’ through online information seeking are suggested by Lewis (2006a) and Henwood et al. (2003). Lewis’s (2006a) interview study with young people found that there were marked differences in the processes of reflexivity participants of

39 different social positions engaged with as they negotiated the online environment.

Similarly, Henwood and colleagues (2003) suggest that the emergence of a reflexive health consumer is limited by various factors, including concerted avoidance of self-monitoring, varied information literacy levels and wariness of affecting doctor-patient relationships. While the internet may be able to provide opportunities for users to become informed, and indeed empowered (around health issues), this process is contingent and involves negotiation of both established and novel societal pressures and expectations.

As well as exploring everyday consumers of health information and those seeking information following a specific diagnosis, some research has focused on users’

engagement with health-related content online at particular transitions during the lifecourse, such as puberty, pregnancy and menopause/andropause (male

‘menopause’). Recent research on online interaction amongst pregnant women traces the appropriation of professional medical discourse and suggests the empowerment of users in rethinking and discussing previously side-lined issues (Cohen and Raymond, 2011). Similar themes of empowerment are emergent from studies around women’s use of the internet for support and health information in mid-life (Dare and Green, 2011). This research explores the interplay between professional and lay knowledge construction and focuses on the supportive communities which permeate much of the user-focused research around health and the internet.

Related to the importance of the internet for enabling empowerment is the provision of peer support and engagement with experiential information through online technologies. Ziebland and Wyke’s (2012) realist review provides a summary of the key means by which people’s health is impacted by the sharing of health experiences online. By collating insights from a range of literature the authors identified seven domains: finding information, feeling supported, maintaining relationships with others, affecting behaviour, experiencing health, learning to tell the story and visualizing disease. They conclude that users’ accessing other people’s accounts of health and illness is a defining feature of ‘e-health’ and that the act of contributing health-related content profoundly influences patients’

40 understandings and experiences of health issues. More specifically, there has been particular research interest in the formation and use of internet support groups, also known as electronic support groups (ESGs) around health issues (Conrad and Stults, 2010). A number of qualitative studies suggest that people find specific and sustained health-related support online (Broom, 2005a, Fox et al., 2005, Bar-Lev, 2008, Barker, 2008). Supportive online communities provide important public spaces for expression of thoughts and emotions about illness and for some users can offer safe spaces in which to express alternative accounts of their experience and identity (Broom, 2005a, Bar-Lev, 2008). In some cases, online support groups, through users sharing accounts of embodied experience, enable the emergence of informed or expert patients (Fox et al., 2005) and indeed groups may go on to develop wider objectives, such as challenging medical expertise (Barker, 2008).

More recently, studies have explored the use of social media for the provision of supportive communities for young people with chronic disease (Nordqvist et al., 2009, Ekberg et al., 2010). Peer-support appears to be one of the most clearly positive consequences of the emergence of the internet as a site for health-related interaction, and is recognised by both users and researchers alike. However, few studies have focused on comparing people’s experiences of engaging in supportive online communities across different health issues (Chen, 2012) or whether there are differences in men’s and women’s accounts of engaging in such communities.

The consequences of patients’ use of online health information for relationships with health professionals is another prominent issue in the literature. McMullan’s review (2006) points out online information empowerment can progress patients’

relationships with health professionals in a number of ways, perhaps most productively resulting in a collaborative relationship with patient and professional collating and analysing sources of information together. A more recent review suggests possible changes to relationships with health professionals as a result of active online engagement with health content (Dedding et al., 2010). Some of the negative impacts include patients delaying consultation (and therefore diagnosis), professionals feeling threatened, and patients requesting inappropriate care.

Positive impacts include increasing patients’ confidence in encounters with health

41 professionals through access to professional vocabulary, and supplementing patients’ existing knowledge through health promotion materials. Relationships with health professionals are therefore likely to be impacted to some extent by users’ increasing engagement with health content online, but the effects of this are neither clearly positive nor negative.

Online technologies may impact health professionals in another sense. Some social media technologies, more often associated with shopping websites, have allowed the further exertion of patient agency through contributing and sharing opinions of identifiable health professionals on user-review websites. Hardey (2010) explored the existence of such websites, which are more prominent in the United States (US) but increasingly utilised in the UK, and the type and tone of the user-generated content they feature. These facilities afford individuals opportunities to enact

‘consumer’ roles. They can pre-judge and select health professionals according to accounts from other users and so challenge the nature of existing professional-patient relationships. This phenomenon provides an example of how developments in users’ online practices can disrupt established healthcare conventions and offline relationships. The existence of sites such as PatientsLikeMe, which allows patients to compare their treatment experiences and results with other patients, also serves to reconfigure relationships between patients and health professionals. As these websites expand, individual users contribute to projects collating health information which could also inform research and policy, further redefining relationships between individuals and health-related institutions (Wicks et al., 2010, Bletsos et al., 2013). However, despite these reconfigurations of relationships between patients and health professionals facilitated by social media technologies, some health-related social media content serves to reinforce and reproduce offline relationships with health professionals, as trusted sources of information. A recent study of ‘patient-to-doctor’ online communities suggests that both professional and experiential accounts are valued by users, but health professionals’ contributions are viewed as the more reliable source of information for users (Vennik et al., 2014).

42 A subset of literature around accessing online health information is dedicated to the experiences of parents, accessing and engaging with content which relates to their children’s illness. One recent study explored parents’ preferences for information-seeking about paediatric cancer (Gage and Panagakis, 2012). The authors interviewed parents who said they did not seek information about their child’s illness on the internet for a number of reasons. These included oncologists warning them against going online, being intimidated by the volume of information available online, fearing what they might find out, and concerns about the reliability of information. In contrast, research with parents of children with a genetic disorder suggests the importance of information-seeking online to this group (Schaffer et al., 2008, Gundersen, 2011). Schaffer and colleagues (2008) found that the appropriation of online information, from both factual medical websites and user forums, was important for many parents in producing and furthering genetic knowledge and advocating on behalf of their child. Moreover, Gundersen (2011) identified the internet as an important coping resource for supporting parents’

emotional progress during the processes of diagnosis, prognosis and treatment.

These contrasting experiences of accessing online resources by groups of parents encountering two different health crises indicate divergent attitudes towards the use of health information online by both users and health professionals.

Perceptions and experiences of engaging online with health-related content seem to be related to contextual influences including the implications of the specific medical condition and the advice of individuals. Emotional responses therefore, seem to be supported by both using online resources and rejecting them. Similarly, exerting individual choices about engaging with information, and other users, online seems related to issues of trust and expertise, particular to specific illnesses.