Rare disease prevalence rates are increasing rapidly worldwide, as are the cost of orphan indication drugs used to treat them, posing significant strain on many healthcare systems. In response, a set of tensions have arisen within academic, activist, advocacy, industry, and policy circles over orphan drug pricing. Yet there has to date been no unifying review of the literature engaging critically with these tensions. Addressing this gap, the article examines the narratives in circulation around orphan pricing, the traditions and epistemic bases they draw on, and their points of contestation/coalescence. It does so through a meta-narrative literature review, finding three core narratives. One involves dispute over outlay costs for developing new orphan drugs, often drawing on normative health economics with a base in practical idealism. It argues that (bio)pharmaceutical manufacturers misuse policy incentives to profit excessively through monopoly capitalism. A second narrative draws on both empirical and normative health economics (often steeped in empiricism paired with a utilitarian standpoint). It contends that high orphan drug prices signify a healthy market and justifiably support longer-term innovation while promoting wider equity of access. A third (midway) narrative draws on the sociology of health and innovation studies alongside normative health economics and health policy studies to suggest alternative models of innovation and valuation. As a unifying meta-narrative, the review finds a sustained call for reform, centred on welfare economics and resource allocation, where current incentives and regulations are held to be insufficient. Overall, the article recommends that regulators look to alternative models of innovation steeped in social science thinking to modify reviewing appraisal, coverage, and reimbursement processes for orphan drugs. Also, that greater patient inclusion and transparency would help include a wider range of intangible social factors that rare disease patients face in accessing high priced orphan drugs.

This article provides new evidence of the ways that smart cities materialize within specific sites and contexts through smart street furniture (SSF). Drawing on empirical data generated through mixed-method field research, the article examines the situated data relations that emerge in the context of the adoption of InLinkUK smart kiosks in Glasgow and Strawberry Energy smart benches in London. The concept of “silences” is proposed to analyze insufficiently articulated data relations resulting from gaps or absences in the use, design, and governance of this new type of urban furniture. The argument made is that data silences lead to failures to account for decisions and the deferral of responsibilities regarding the data aspects of these objects. It is suggested that an approach that focuses on “listening” to and “speaking” about data relations can enable dialogical forms of accountability, and realize the potential of SSF for citizens in local contexts.

This paper discusses a methodology that seeks to address one of the challenges in working with a range of data in mixed-methods audience research, which is how to sort, order and categorise different data so that they can be systematically combined and interrogated. The methodology was developed as part of the “Beyond the Multiplex: audiences for specialised films in English regions” (BtM) project. This project required a mixed methods approach using surveys, interviews, focus groups and document analysis to explore the richness of audience experiences and trends in the context of regional film policy. This required a mixed methods approach using surveys, interviews, focus groups and document analysis. The project utilised a data model approach that uses the principles of a computational ontology in order to sort, order and categorise data for systematic interrogation. The paper discusses methods, data, coding, and the use of a data model to support data analysis. We argue that this approach enables the cross referencing of data that provides a rich, multi-layered and relational understanding of film audiences but requires time and attention to data management and coding. Although, additionally it also forms the basis of an open access data resource for future research.

This paper focuses on patterns of film consumption within cultural consumption more broadly to assess trends in consumerism such as eclectic consumption, individualised consumption and omnivorous/univorous consumption and whether economic background and status feature in shaping cultural consumption. We focus on film because it is widely consumed, online and offline, and has many genres that vary in terms of perceived artistic and entertainment value. In broad terms, film is differentiated between mainstream commercially driven film such as Hollywood blockbusters, middlebrow “feel good” movies and independent arthouse and foreign language film. Our empirical statistical analysis shows that film consumers watch a wide range of genres. However, films deemed to hold artistic value such as arthouse and foreign language feature as part of broad and wide-ranging pattern of consumption of film that attracts its own dedicated consumers. Though we found that social and economic factors remain predictors of cultural consumption the overall picture is more complex than a simple direct correspondence and perceptions of other cultural forms also play a role. Those likely to consume arthouse and foreign language film consume other film genres and other cultural forms genres and those who “prefer” arthouse and foreign language film have slightly more constrained socio-economic characteristics. Overall, we find that economic and cultural factors such income, education, and wider consumption of culture are significant in patterns of film consumption.

This paper focuses on patterns of film consumption within cultural consumption more broadly to assess trends in consumerism such as eclectic consumption, individualised consumption and omnivorous/univorous consumption and whether economic background and status feature in shaping cultural consumption. We focus on film because it is widely consumed, online and offline, and has many genres that vary in terms of perceived artistic and entertainment value. In broad terms, film is differentiated between mainstream commercially driven film such as Hollywood blockbusters, middlebrow ‘feel good’ movies and independent arthouse and foreign language film. Our empirical statistical analysis shows that film consumers watch a wide range of genres. However, films deemed to hold artistic value such as arthouse and foreign language feature as part of broad and wide-ranging pattern of consumption of film that attracts its own dedicated consumers. Though we found that social and economic factors remain predictors of cultural consumption the overall picture is more complex than a simple direct correspondence and perceptions of other cultural forms also play a role. Those likely to consume arthouse and foreign language film consume other film genres and other cultural forms genres and those who ‘prefer’ arthouse and foreign language film have slightly more constrained socio-economic characteristics. Overall, we find that economic and cultural factors such income, education, and wider consumption of culture are significant in patterns of film consumption.