Fadhila Mazanderani

''People power'' or ''pester power''? YouTube as a forum for the generation of evidence and patient advocacy §

Objective Venoplasty has been proposed, alongside the theory of chronic cerebrospinal venous insufficiency (CCSVI), as a treatment for multiple sclerosis (MS). Despite concerns about its efficacy and safety, thousands of patients have undergone the procedure. This paper analyses YouTube videos where patients have shared their treatment experiences. Methods Content analysis on the 100 most viewed videos from over 4000 identified in a search for ‘CCSVI’, and qualitative thematic analysis on popular ‘channels’ demonstrating patients’ experiences. Results Videos adopt an overwhelmingly positive stance towards CCSVI; many were uploaded by patients and present pre- and/or post-treatment experiences. Patients demonstrate rather than merely describe their symptoms, performing tests on themselves before and after treatment to quantify improvement. Videos combine medical terminology and tests with personal experiences of living with MS. Conclusion Social media technologies provide patients with novel opportunities for advocating for particular treatments; generating alternative forms of ‘evidence’ built on a hybrid of personal experience and medical knowledge. Practice implications Healthcare practitioners need to engage with new digital forms of content, including online social media. Instead of disregarding sources not considered ‘evidence-based’, practitioners should enhance their understanding of what ‘experiential-evidence’ is deemed significant to patients, particularly in contested areas of healthcare.

Biographical value: towards a conceptualisation of the commodification of illness narratives in contemporary healthcare

Illness narratives play a central role in social studies of health and illness, serving as both a key theoretical focus and a popular research method. Despite this, relatively little work has gone into conceptualising how and why illness narratives - be they in books, websites, television or other media - are commodified in contemporary healthcare and its social environment; namely, how distinctive forms of value are generated in the production, circulation, use and exchange of illness narratives. In this article we propose the notion of biographical value as a first step towards conceptualising the values attributed to illness narratives in this context. Based on a secondary analysis of 37 interviews with people affected by 15 different health conditions in the UK (all of whom have shared their illness experiences across various media) and drawing on understandings of value in research on the bioeconomy and the concept of biovalue in particular, we sketch out how epistemic, ethical and economic forms of value converge and co-constitute each other in the notion of biographical value and in broader economies of illness experiences.

Privacy dictionary: A new resource for the automated content analysis of privacy

This article presents the privacy dictionary, a new linguistic resource for automated content analysis on privacy-related texts. To overcome the definitional challenges inherent in privacy research, the dictionary was informed by an inclusive set of relevant theoretical perspectives. Using methods from corpus linguistics, we constructed and validated eight dictionary categories on empirical material from a wide range of privacy-sensitive contexts. It was shown that the dictionary categories are able to measure unique linguistic patterns within privacy discussions. At a time when privacy considerations are increasing and online resources provide ever-growing quantities of textual data, the privacy dictionary can play a significant role not only for research in the social sciences but also in technology design and policymaking.

Metaphoric language and the articulation of emotions by people affected by motor neurone disease

Objective: To explore the use of metaphoric language to convey emotion in interviews with people affected by motor neurone disease, a progressive neurological condition that sits between chronic and terminal illness. Methods: Secondary analysis of 46 interviews with people affected by motor neurone disease in the United Kingdom (35 individuals with the condition, 11 carers). Results: Metaphor and figurative language was used to communicate the intensely emotional experiences of being diagnosed with and living with motor neurone disease. We focus on three pervasive themes that were threaded throughout the interviews: battling and fighting; the self under attack and journeying through a physical and emotional landscape. Discussion: This secondary analysis of qualitative research interviews enriches our understanding of the articulation of emotion in motor neurone disease and adds to the literature on metaphor in chronic illness. Of particular interest is how the metaphors used contrasted with other conditions in the relative absence of metaphors of ‘fighting’ the disease. Furthermore, we analyse the ways in which participants used metaphors to give voice to emotions that are extremely difficult to articulate in ‘literal’ language, and how, in doing so, they blurred the distinction between ‘physical’ symptoms and ‘emotional’ states. Sensitivity to metaphors may help professionals communicate with people affected by motor neurone disease.

The Patient's View: Perspectives from Neurology and the ‘New’ Genetics

In 1985 the historian Roy Porter called for a ‘medical history from below’, arguing that it was time to move away from a history of medicine focussed on the medical establishment towards one that paid attention to ‘the patient’s view’ (Porter, 1985). Porter was not alone in this; since the 1970s historians and sociologists have been calling for their respective disciplines to pay more attention to what is variously referred to as the patient’s ‘view’, ‘experience’, or ‘perspective’. In no way limited to the social sciences, this repositioning and prioritising of ‘the patient’ been shaped by a number of interrelated, yet strangely contradictory, social and political forces. Informed by Marxist and New Left-inspired critiques of ‘medicalisation’ (Zola, 1972; Illich, 1976), patient activists and allied researchers have sought to articulate the lived experience of illness as a means of ‘emancipating’ patients from medical hegemony. At the same time, a need to ‘empower’ Science as Culture, 2014 Vol. 23, No. 1, 135–144, http://dx.doi.org/10.1080/09505431.2013.871246

Therapeutic Sovereignty: HIV/AIDS and the Politics of Survival in West Africa

Since the Centers for Disease Control (CDC; now the Centers for Disease Control and Prevention) in Atlanta started issuing reports on the emergence of strange cases of Kaposi’s sarcoma and pneumocystis carinii pneumonia (PCP) in otherwise healthy young men in 1981, the syndrome that would go on to become known as AIDS has been extensively studied by the biomedical and social sciences. Over the past 30 years social science research on HIV/AIDS has changed rapidly, responding to the shifting demographics of the epidemic, high levels of patient activism and the emergence of antiretroviral medication as a viable treatment for the virus. Despite these changes, the question posed by the cultural historian Paula Treichler (1999) in the title of her collection of critical essays on the cultural significance of HIV/AIDS—How to Have Theory in an Epidemic?—still remains relevant today. While there is no straightforward ‘answer’ to this question, it is one with which, in different incarnations, many social scientists working in the field of biomedicine grapple. Eleven years after the publication of Treichler’s Cultural Chronicle of AIDS, medical anthropologist and HIV physician Vinh-Kim Nguyen provides in his The Republic of Therapy one version of what such theorising might look Science as Culture, 2013 Vol. 22, No. 2, 256–260, http://dx.doi.org/10.1080/09505431.2012.718756

Privacy as a Practice: Exploring the Relational and Spatial Dynamics of HIV-Related Information Seeking

This paper is an exploration of the relational and spatial dynamics of privacy in the context of HIV-related information seeking. It is a study of how a specific group of people, women living with HIV in London, go about “doing privacy” when seeking information in relation to their health. It is commonplace to stress the salience of adopting a contextual approach to privacy. We explore this further, asking what treating privacy as a highly situated practice rather than as a discrete “value” or “right” can tell us about what constitutes the “private” versus the “public”. Based on the analysis of 41 qualitative interviews on Internet use by women living with HIV, the aim of the paper is twofold: to use the case of how people living with a chronic stigmatized illness go about seeking health information to develop a relational and spatial understanding of privacy; and to use this situated case to explore alternative methods for researching privacy as an embedded and highly contingent practice.