[Show abstract][Hide abstract] ABSTRACT: 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.
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.
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.
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.
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.
[Show abstract][Hide abstract] ABSTRACT: Now that most UK universities have increased their tuition fees to £9,000 a year and are implementing new Access Agreements as required by the Office for Fair Access, it has never been more important to examine the extent of fair access to UK higher education and to more prestigious UK universities in particular. This paper uses Universities and Colleges Admissions Service (UCAS) data for the period 1996 to 2006 to explore the extent of fair access to prestigious Russell Group universities, where 'fair' is taken to mean equal rates of making applications to and receiving offers of admission from these universities on the part of those who are equally qualified to enter them. The empirical findings show that access to Russell Group universities is far from fair in this sense and that little changed following the introduction of tuition fees in 1998 and their initial increase to £3,000 a year in 2006. Throughout this period, UCAS applicants from lower class backgrounds and from state schools remained much less likely to apply to Russell Group universities than their comparably qualified counterparts from higher class backgrounds and private schools, while Russell Group applicants from state schools and from Black and Asian ethnic backgrounds remained much less likely to receive offers of admission from Russell Group universities in comparison with their equivalently qualified peers from private schools and the White ethnic group.
British Journal of Sociology 06/2013; 64(2):344-364.
[Show abstract][Hide abstract] ABSTRACT: 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.
[Show abstract][Hide abstract] ABSTRACT: The 2004 Indian Ocean tsunami highlighted the importance of interdependencies between nations, delivery of humanitarian aid in an empowering manner, and long-term reconstruction. I examine relationships between overseas actors and local residents in tsunami-affected villages in Sri Lanka in a project initiated by the International Association of Schools of Social Work through its Rebuilding People's Lives After Disasters Network and another based on an institutional endeavour supported by Durham University because these sought to empower local communities through local, egalitarian partnerships. Lacking sufficient educational resources, capacity building in social work education has become a long-term objective.
Journal of Social Work in Disability & Rehabilitation 01/2013; 12(1-2):48-66.
[Show abstract][Hide abstract] ABSTRACT: Interest among historians, philosophers and sociologists of science in population-based biomedical research has focused on the randomised controlled trial to the detriment of the longitudinal study, the temporally extended, serial observation of individuals residing in the same community. This is perhaps because the longitudinal study is regarded as having played a secondary role in the debates about the validity of populations-based approaches that helped to establish epidemiology as one of the constitutive disciplines of contemporary biomedicine. Drawing on archival data and publications relating to the Baltimore Longitudinal Study of Aging, we argue however that the historical development of the longitudinal study is richer and more significant than has been appreciated. We argue that this history is shaped by the tension between two sets of epistemic practices, devices and norms. On the one side there were those who emphasised randomisation and sampling to evidence claims about, and justify policies with respect to, the aetiology of disease. On the other side there were those who evoked the technical repertoire of physiological research, especially the notion of the 'model organism', to argue for a different integration of the individual in modern society.
Studies in History and Philosophy of Science Part C Studies in History and Philosophy of Biological and Biomedical Sciences 09/2011; 42(3):317-27.
[Show abstract][Hide abstract] ABSTRACT: This study explores why progress with tackling health inequalities has varied among a group of local authority areas in England that were set targets to narrow important health outcomes compared to national averages. It focuses on premature deaths from cancers and cardiovascular disease (CVD) and whether the local authority gap for these outcomes narrowed. Survey and secondary data were used to create dichotomised conditions describing each area. For cancers, ten conditions were found to be associated with whether or not narrowing occurred: presence/absence of a working culture of individual commitment and champions; spending on cancer programmes; aspirational or comfortable/complacent organisational cultures; deprivation; crime; assessments of strategic partnership working, commissioning and the public health workforce; frequency of progress reviews; and performance rating of the local Primary Care Trust (PCT). For CVD, six conditions were associated with whether or not narrowing occurred: a PCT budget closer or further away from target; assessments of primary care services, smoking cessation services and local leadership; presence/absence of a few major programmes; and population turnover. The method of Qualitative Comparative Analysis was used to find configurations of these conditions with either the narrowing or not narrowing outcomes. Narrowing cancer gaps were associated with three configurations in which individual commitment and champions was a necessary condition, and not narrowing was associated with a group of conditions that had in common a high level of bureaucratic-type work. Narrowing CVD gaps were associated with three configurations in which a high assessment of either primary care or smoking cessation services was a necessary condition, and not narrowing was associated with two configurations that both included an absence of major programmes. The article considers substantive and theoretical arguments for these configurations being causal and as pointing to ways of improving progress with tackling health inequalities.
Social Science [?] Medicine 06/2011; 72(12):1965-74.
[Show abstract][Hide abstract] ABSTRACT: Explicit health care rationing or priority-setting is the use of institutional procedures for the systematic allocation of resources within health care systems. With the establishment of priority setting systems in various countries in the past two decades, research has been conducted on their principles, methods and institutional aspects. This paper draws on the sociology of science and technology to propose an uncertainty-focused conceptual model of the relationship between knowledge practises and political processes in health care rationing. Taking a case-study approach, the paper explores the public controversy about whether dementia drugs should be available on the UK National Health Service. It shows how three aspects of the controversy - loose institutional framing, open membership and hybrid knowledge - worked together to enable the use of a 'pragmatic balance' between rules and cases. Placing this outcome within the space of possibilities suggested by the model, the paper suggests that accepting and fostering the exploration of uncertainty at the core of health care priority setting systems should provide those systems with increased social robustness.
Social Science [?] Medicine 03/2011; 72(8):1333-41.
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