Feeling less alone online: patients' ambivalent engagements with digital media.

Digital media offer the chronically ill, especially those who experience related isolation, unparalleled opportunities to connect with others. This article asks, how do these individuals ascribe meaning to and use these media to manage their condition and related isolation? Using the concepts of affordance and emotional community, and drawing on the findings from an Australian study on patients' use of digital media, we examine individuals' ambivalent ascriptions of media, which are both feared and distrusted for the risks they present and embraced as invaluable tools of social connection. We argue that this ambivalence is explicable in terms of the communities to which the chronically ill belong which are founded on strong emotional bonds. In a context in which individuals tend to feel isolated through pain and/or stigmatisation, digital media may offer powerful means for sharing and affirming their experiences, the subjective benefits of which may outweigh the perceived risks. The article discusses the functions and features of digital media that the chronically ill value and distrust and concludes by considering the implications of our analysis for strategies to address the needs of people who feel isolated as a consequence of their condition.

'A platform for goodness, not for badness': The heuristics of hope in patients' evaluations of online health information.

Patient advocates and activists are increasingly relying on online health information that can assist them to manage their health condition. Yet once online, they will confront diverse information whose veracity and utility are difficult to determine. This article offers a sociological analysis of the practical methods, or heuristics, that patient advocates and activists use when making judgements about the credibility and utility of online information. Drawing on the findings from interviews with fifty Australian patient advocates and activists, it is argued that these individuals' use of these heuristics reflects their hopes that information can help them manage their condition which may, in some cases, override fears and uncertainties that arise during searches. The article identifies the common 'rules-of-thumb'-or what we call the 'heuristics of hope'-that patient advocates/activists may use to make judgements and highlights the dangers of over-reliance on them, especially regarding clinically unproven, potentially unsafe treatments. Analyses of the heuristics of hope, we conclude, can assist in understanding the dynamics of decision-making and the role that affect plays in online patient communities which is crucial in an age characterised by the rapid circulation of emotionally charged messages, often based on hope.

The shifting politics of patient activism: From bio-sociality to bio-digital citizenship.

Digital media provide novel tools for patient activists from disease- and condition-specific communities. While those with debilitating conditions or disabilities have long recognised the value of collective action for advancing their interests, digital media offer activists unparalleled opportunities to fulfil their goals. This article explores the shifting politics of 'activism' in the increasingly digitally mediated, commercialised context of healthcare, asking: what role have digital media played in the repertoire of activists' strategies? And, to what extent and how has the use of such media impacted the very concept of activism? Building on sociological ideas on emergent forms of 'biological citizenship' and drawing on findings from an analysis of available media, including television and print news reportage, online communications, published histories and campaign material and other information produced by activists in HIV/AIDS and breast cancer communities, we argue that digital media have profoundly shaped how 'activism' is enacted, both the goals pursued and the strategies adopted, which serve to broadly align contemporary patient communities' interests with those of science and business. This alignment, which we characterise as 'bio-digital citizenship', has involved a fundamental reorientation of 'activism' from less of a struggle for rights to more of a striving to achieve a public profile and attract funding. We conclude by calling for a reconceptualisation of 'activism' to more adequately reflect the workings of power in the digital age, whereby the agency and hopes of citizens are central to the workings of political rule.