Navigating the cartographies of trust: how patients and carers establish the credibility of online treatment claims.

Digital media offer citizens novel ways of 'enacting' health and illness, and treatment and care. However, while digital media may so 'empower' citizens, those searching for credible information will be confronted with various, often-conflicting claims that may have 'disempowering' effects. This article uses Gieryn's concept of the 'cultural cartography' to explore the criteria that patients and carers employ in establishing the credibility of information on alleged treatments. Drawing on data from interviews with Australian patients and carers who have travelled or considered travelling abroad for unproven commercial stem cell treatments, the article examines how individuals assess rival sources of epistemic authority - science-based and non-science-based - as they search for credible information. As we argue, in a context where conventional treatment options are perceived to be limited or non-existent - which is likely to be the case with those suffering severe, life-limiting conditions - and the credibility of sources uncertain, matters of opinion and belief are prone to being interpreted as matters of fact, with potentially far-reaching implications for citizens' health. Revealing the mechanisms by which individuals ascribe credibility to health information, we conclude, has become crucial as digital media assume a growing role in health and healthcare and governments encourage citizens to become 'digitally literate'.

Citizens' use of digital media to connect with health care: Socio-ethical and regulatory implications.

Digital technologies promise to transform practices of health, medicine and health care and 'power' economies. In expectation of their presumed future benefits, governments in recent years have invested heavily in new technology initiatives and have sought to engender 'digital literacy' among citizens. This article introduces papers and expands on themes arising from a special issue that explores the socio-ethical and regulatory implications of citizens' use of digital media to connect with health care. We set the scene by examining the promissory discourse that attaches to digital technologies as applied to health care, and its role in shaping actions, and then consider the longer term prospects and implications of digitalisation for conceptions of citizenship and established categories and distinctions. As we argue, given the history of new technologies, the longer term implications of digitalisation are likely to differ significantly from those envisaged. Digital technologies promise radical positive disruption. Yet many uncertainties accompany their development and future applications and likely implications. Making reference to papers in the special issue and the wider literature, the article considers the prospects of digitalisation in medicine and health care in light of the colonisation of the Internet by powerful technology companies, the shift in capitalist economies from processes of production to technologies of prediction, evidence of inequalities in access to the Internet and related devices, and the growing number of data breaches involving personal health information. We draw attention to the failure of governments to engage citizens in substantive deliberations about digitalisation and its future potential implications and the ultimate democratic deficit that this represents. We ask, what does it mean to 'regulate' digital media in a context in which data are widely viewed as the 'new oil'? While we have no straightforward answers, we suggest that recent legislative efforts (e.g. General Data Protection Regulation in Europe) and growing calls for 'algorithmic accountability' have the potential to temper the more harmful aspects of digitalisation.

The politics of evidence in online illness narratives: An analysis of crowdfunding for purported stem cell treatments.

This article addresses the growing trend of crowdfunding for unproven stem cell-based treatments. Our analysis uses quantitative and qualitative data collected from two popular fundraising sites to examine how these sites are used to fund purported stem cell 'treatments' or 'therapies'. In addition to mapping the use and success of these online campaigns by people with different health conditions in different locations, we consider the breakthrough restitution story as a key narrative that campaign organisers use to solicit donations. We argue that crowdfunding is a rapidly growing digital space where 'truths' about experimental treatments are constituted and a politics of evidence is unfolding. These developments are to the potential financial benefit of crowdfunding platforms and businesses offering unproven stem cell-based interventions, and to the potential detriment of patients and their supporters.

Social class, anxieties and mothers' foodwork.

In the context of concerns about childhood obesity, mothers are placed at the forefront of responsibility for shaping the eating behaviour and consequently the health of their young children. This is evident in a multitude of diverse sites such as government reports, health promotion materials, reality TV shows and the advice of childcare nurses and preschools. These sites produce a range of resources available to mothers to draw on to constitute themselves as mothers in terms of caring for their children's health. Drawing on a qualitative study of mothers recruited through three Australian preschool centres, this article examines how the working-class and middle-class mothers of preschool-aged children engage with knowledge about motherhood, children and health and how those engagements impact on their mothering, their foodwork and their children. We argue that, unlike the working-class mothers pathologised in some literature on obesity, these working-class mothers demonstrated a no-nonsense (but still responsibilised) approach to feeding their children. The middle-class mothers, on the other hand, were more likely to engage in practices of self-surveillance and to demonstrate considerable anxieties about the appropriateness of their practices for their children's current and future health.

Between hope and evidence: how community advisors demarcate the boundary between legitimate and illegitimate stem cell treatments.

Stem cell science provides an exemplary study of the 'management of hope'. On the one hand, raising 'hopes' and expectations is a seen as a necessary aspect of securing investment in promising innovative research. On the other, such hyperbole risks raising hopes to a level that may lead people to undertake undue risks, which may ultimately undermine confidence in medical research. In this context, the 'management of hope' thus involves the negotiation of competing claims of truth about the value and safety of particular treatments and about the trustworthiness of providers. Using Gieryn's concept of boundary-work, this article examines the means by which this work of 'managing hope' is undertaken. Drawing on data collected as part of our study that investigated the perspectives of those who are consulted by patients and their carers about stem cell treatments, we explore how these community advisors ­ both scientists and clinicians with a stake in stem cell research and representatives from patient advocacy groups ­ demarcate the boundary between legitimate and illegitimate treatments. In particular, we examine how these actors rhetorically use 'evidence' to achieve this demarcation. We argue that analysing accounts of how advisors respond to patient enquiries about stem cell treatments offers a window for examining the workings of the politics of hope within contemporary bioscience and biomedicine. In conclusion, we emphasize the need to re-conceptualize the boundary between science and non-science so as to allow a better appreciation of the realities of health care in the age of medical travel.