Tracking the reflexivity of the (dis)engaged citizen: some methodological reflections

The relationship between governments and citizens in many contemporary democracies is haunted by uncertainty and sociologists face the task of listening effectively to citizens’ own reflections on this uncertain relationship. This article reflects on the qualitative methodology of a recently completed UK project which used a combination of diary and multiple interviews/ focus groups to track over a fieldwork period of up to a year citizens’ reflections on their relationship to a public world and the contribution to this of their media consumption. In particular, the article considers how the project’s multiple methods enabled multiple angles on the inevitable artificiality and performative dimension of the diary process, resulting in rich data on people’s complex reflections on the uncertain position of the contemporary citizen

Comparison of governance approaches for the control of antimicrobial resistance: Analysis of three European countries

Policy makers and governments are calling for coordination to address the crisis emerging from the ineffectiveness of current antibiotics and stagnated pipe-line of new ones – antimicrobial resistance (AMR). Wider contextual drivers and mechanisms are contributing to shifts in governance strategies in health care, but are national health system approaches aligned with strategies required to tackle antimicrobial resistance? This article provides an analysis of governance approaches within healthcare systems including: priority setting, performance monitoring and accountability for AMR prevention in three European countries: England, France and Germany. Advantages and unresolved issues from these different experiences are reported, concluding that mechanisms are needed to support partnerships between healthcare professionals and patients with democratized decision-making and accountability via collaboration. But along with this multi-stakeholder approach to governance, a balance between regulation and persuasion is needed

An anarchy of cultures: aesthetics and the changing school

It is the contention of this paper that schools are currently sandwiched between demands of the economy on one side and increasingly fundamentalist communities on the other; that schools need some degree of autonomy from each; that the greatest challenge of the century is how we can live together despite our differences; and that the only way of successfully meeting this challenge is for schools to put social justice at the heart of their activities, activities that are best informed by the cultivation of reasoned imagination – that is, by an aesthetic approach to the development of intellectual, social, cultural, economic and personal identities

Long-Term Safety of Growth Hormone in Adults With Growth Hormone Deficiency:Overview of 15 809 GH-Treated Patients

Context Data on long-term safety of growth hormone (GH) replacement in adults with GH deficiency (GHD) are needed. Objective We aimed to evaluate the safety of GH in the full KIMS (Pfizer International Metabolic Database) cohort. Methods The worldwide, observational KIMS study included adults and adolescents with confirmed GHD. Patients were treated with GH (Genotropin [somatropin]; Pfizer, NY) and followed through routine clinical practice. Adverse events (AEs) and clinical characteristics (eg, lipid profile, glucose) were collected. Results A cohort of 15 809 GH-treated patients were analyzed (mean follow-up of 5.3 years). AEs were reported in 51.2% of patients (treatment-related in 18.8%). Crude AE rate was higher in patients who were older, had GHD due to pituitary/hypothalamic tumors, or adult-onset GHD. AE rate analysis adjusted for age, gender, etiology, and follow-up time showed no correlation with GH dose. A total of 606 deaths (3.8%) were reported (146 by neoplasms, 71 by cardiac/vascular disorders, 48 by cerebrovascular disorders). Overall, de novo cancer incidence was comparable to that in the general population (standard incidence ratio 0.92; 95% CI, 0.83-1.01). De novo cancer risk was significantly lower in patients with idiopathic/congenital GHD (0.64; 0.43-0.91), but similar in those with pituitary/hypothalamic tumors or other etiologies versus the general population. Neither adult-onset nor childhood-onset GHD was associated with increased de novo cancer risks. Neutral effects were observed in lipids/fasting blood glucose levels. Conclusion These final KIMS cohort data support the safety of long-term GH replacement in adults with GHD as prescribed in routine clinical practice

The ethical challenge of Touraine's 'living together'

In Can We Live Together? Alain Touraine combines a consummate analysis of crucial social tensions in contemporary societies with a strong normative appeal for a new emancipatory 'Subject' capable of overcoming the twin threats of atomisation or authoritarianism. He calls for a move from 'politics to ethics' and then from ethics back to politics to enable the new Subject to make a reality out of the goals of democracy and solidarity. However, he has little to say about the nature of such an ethics. This article argues that this lacuna could usefully be filled by adopting a form of radical humanism found in the work of Erich Fromm. It defies convention in the social sciences by operating from an explicit view of the 'is' and the 'ought' of common human nature, specifying reason, love and productive work as the qualities to be realised if we are to move closer to human solidarity. Although there remain significant philosophical and political differences between the two positions, particularly on the role to be played by 'the nation', their juxtaposition opens new lines of inquiry in the field of cosmopolitan ethics

The TOSCA Registry for Tuberous Sclerosis-Lessons Learnt for Future Registry Development in Rare and Complex Diseases.

Introduction: The TuberOus SClerosis registry to increase disease Awareness (TOSCA) is an international disease registry designed to provide insights into the clinical characteristics of patients with Tuberous Sclerosis Complex (TSC). The aims of this study were to identify issues that arose during the design, execution, and publication phases of TOSCA, and to reflect on lessons learnt that may guide future registries in rare and complex diseases. Methods: A questionnaire was designed to identify the strengths, weaknesses, and issues that arose at any stage of development and implementation of the TOSCA registry. The questionnaire contained 225 questions distributed in 7 sections (identification of issues during registry planning, during the operation of the registry, during data analysis, during the publication of the results, other issues, assessment of lessons learnt, and additional comments), and was sent by e-mail to 511 people involved in the registry, including 28 members of the Scientific Advisory Board (SAB), 162 principal investigators (PIs), and 321 employees of the sponsor belonging to the medical department or that were clinical research associate (CRA). Questionnaires received within the 2 months from the initial mailing were included in the analysis. Results: A total of 53 (10.4%) questionnaires were received (64.3% for SAB members, 12.3% for PIs and 4.7% for employees of the sponsor), and the overall completeness rate for closed questions was 87.6%. The most common issues identified were the limited duration of the registry (38%) and issues related to handling of missing data (32%). In addition, 25% of the respondents commented that biases might have compromised the validity of the results. More than 80% of the respondents reported that the registry improved the knowledge on the natural history and manifestations of TSC, increased disease awareness and helped to identify relevant information for clinical research in TSC. Conclusions: This analysis shows the importance of registries as a powerful tool to increase disease awareness, to produce real-world evidence, and to generate questions for future research. However, there is a need to implement strategies to ensure patient retention and long-term sustainability of patient registries, to improve data quality, and to reduce biases

From Indymedia to Anonymous: rethinking action and identity in digital cultures

The period following the social mobilizations of 2011 has seen a renewed focus on the place of communication in collective action, linked to the increasing importance of digital communications. Framed in terms of personalized ‘connective action’ or the social morphology of networks, these analyses have criticized previously dominant models of ‘collective identity’, arguing that collective action needs to be understood as ‘digital networking’. These influential approaches have been significantly constructed as a response to models of communication and action evident in the rise of Independent Media Centres in the period following 1999. After considering the rise of the ‘digital networking’ paradigm linked to analyses of Indymedia, this article considers the emergence of the internet-based collaboration known as Anonymous, focusing on its origins on the 4chan manga site and its 2008 campaign against Scientology, and also considers the ‘I am the 99%’ microblog that emerged as part of the Occupy movement. The emergence of Anonymous highlights dimensions of digital culture such as the ephemeral, the importance of memes, an ethic of lulz, the mask and the grotesque. These forms of communication are discussed in the light of dominant attempts to shape digital space in terms of radical transparency, the knowable and the calculable. It is argued that these contrasting approaches may amount to opposing social models of an emerging information society, and that the analysis of contemporary conflicts and mobilizations needs to be alert to novel forms of communicative practice at work in digital cultures today

The concept of solidarity: emerging from the theoretical shadows?

The concept of solidarity has been relatively neglected by social scientists since Durkheim's pioneering work in the late 19th century. The discipline of politics has been guilty of overlooking this 'subjective' element of community life, but recent works by Stjernø and Brunkhorst reflect a growing awareness of the theoretical significance of the concept. Whereas early liberal attempts to theorise solidarity took the nation state to be the appropriate community for its realisation, the emergence of globalisation raises the possibility of human solidarity developing in the global community. Traditional forms of solidarity have been dissipated by the social changes accompanying globalisation, but they were often locked into the defence of particular interests. New forms may be emerging to rekindle the broader vision of human solidarity. Recent work by writers such as Habermas, Honneth, Rorty and Touraine focuses on widening and deepening democratic participation and/or the articulation of our ethical obligations in various ways. It is argued here that these perspectives need to be supplemented by a radical humanist approach grounded in a normative theory of human self-realisation