Issue-networks as omitted publics in the construction of #rarediseaseday discourse

Background: Over 450 million people worldwide have a rare disease. Yet despite healthcare policy rhetoric placing an onus on inclusive public engagement, rare disease publics are often engaged as data sources or product/service consumers. Meanwhile, various rare disease actors congregate around ‘Rare Disease Day’ each year – a global event with various online and offline talks, workshops, and sessions. In 2021, ~4.3 million tweets marked Twitter as a locus of exchange for the event. Methods: To examine public discourse around the event, the paper draws on social network and qualitative analyses of 40,366 Twitter tweets/retweets about rare disease day 2021 posted between 10-Feb-2021 and 10-Mar-2021, analysing them through a controversy theory lens. After identifying particularly influential Twitter users and groups, the paper examines their textual and visual communication strategies. Results: It funds three distinct orientations to rare disease discourse on Twitter (mission, awareness, and actor). In doing so, the paper locates a gap in direct engagement between medical authority and patients. Conclusions: It suggests that each orientation towards the discourse around rare disease day 2021 might be used by policymakers and researchers to engage with rare disease publics on social media in a more inclusive way as a pathway to better healthcare provision

The construction of rare disease discourse on YouTube: highlighting a disparity between policy rhetoric and patient practices around public engagement [version 1; peer review: awaiting peer review]

Background: Policy rhetoric around the 6,000-8,000 rare diseases affecting 300 million people worldwide often focuses on public engagement. Meanwhile, medical authorities tend either to treat patients with rare diseases as pre-categorised data sources, proffer to them notions of technological self-care as empowerment, or recruit them as advocacy allies. Conversely, people living with rare diseases often mobilise and engage with one another in self-organised communities via social media to share discussion, information, and resources. How rare disease discourse forms on specific social media platforms, the role of different actors (including medical authorities and algorithms), and its relation to public engagement policy are poorly understood. Methods: This paper examines data on YouTube video watching/sharing (gathered from YouTube’s API via DMI’s ‘Data Tools for YouTube’) through social network analysis (read through a controversy analysis lens). Results: The paper identifies eight patterns – each revolving around different levels of: focus on rare disease content; engagement between content and viewers, i.e. through likes, dislikes, and surrounding particular videos; permeability of videos between categories; and repetition in viewers watching the same video. Across six of the patterns, the paper finds a rare disease issue-network forming, where discourse is constructed through three distinct communication strategies, each garnering a different form of engagement. Conclusions: Overall, the paper highlights a disconnect between how rare disease discourse is enacted on YouTube and policy promises of public engagement, with potential spaces for dialogue often closed off by medical authorities. To close, the paper provides recommendations for how policymakers might engage with and facilitate more inclusive forms of social media interaction between specific rare disease related communities and clinicians to develop more meaningful forms of knowledge exchange

Being part of an audience: patterns of contemporary film audience experience

Although audiences are often defined as being multiple, diffuse, and fragmented, in terms of film audiences there are five distinct patterns of experience within that multiplicity. These are individualised, group, venue-specific, global, and digital, and people are flexible in moving between them. Drawing on Livingstone’s (1998) notion of audiences being interactive and relational, we show that these patterns are created through the ways people interact with and relate to film. This is seen in the way people choose which film to watch, when, where, and with whom. People create and seek out specific audience experiences by choosing to take up opportunities to watch film at cinemas, at home, and through mobile devices. To understand how and why people create and select specific film audience experiences, we undertook 200 semi-structured interviews that explored audience members’ own experiences. This identified five patterns of experience, which our large sample survey confirmed occurred at scale. In general, people enjoy film through five distinct audience experiences, selecting and moving between these experiences

The dynamics of audience practices: mobilities of film consumption

This article addresses a dynamic of audience practice in engaging with film and identifies that this is characterised through mobilities in film consumption. It draws on rich mixed methods data to argue that not only is film an accessible and highly popular cultural activity, but that it is engaged with in various ways, and shaped by particular configurations of social, cultural, economic, and political factors as well as personal choice. The article develops a novel theoretical approach, combining audience studies and New Cinema History literature. For this, it draws on Hartmann’s (2006) notion of a triple articulation of media, treating screens as technological objects, films as media texts, and the social, spatial, and temporal contexts in which films are watched as particular environments. Each of these are considered equally important to understanding film consumption. The article also incorporates Urry’s (2008) concept of ‘mobilities’ to account for how people move between triple articulations. Here, mobilities can be: corporeal with audiences physically travelling to watch at particular venues, or in adjusting their environment around bodies; social in as far as people share films, both as material objects and in the shared experience of watching together; virtual where audiences discuss films online, share on-demand platform logins, or watch simultaneously in different places; and/or integrative, where digital technologies provide new affordances for watching films while carrying out other practices, e.g. watching via a smartphone while commuting on a train. By combining triple articulation with mobilities to examine interview and survey data, the article identifies and examines five triple articulations of film: (1) going to watch films at the cinema; (2) watching films on television at home; (3) watching films on laptop or tablet whilst in bed; (4) watching films on a smartphone when away from home; and (5) watching films on an in-flight entertainment system (e.g. on long-haul flights). It contends that people move and migrate between triple articulations of film in various ways through a diverse set of mobilities. Overall, the article argues that film consumption is best explored not just through a focus on the film as text, or on the social, temporal and/or spatial environments in which film-watching takes place, but through an understanding that the two are related and framed by wider cultural and economic factors - as well as various interactions between films, people, places, platforms, screens, and venues

Inequalities in regional film exhibition: policy, place and audiences

This article questions the variety of film exhibition in four English regions. While a regional and national frame is the focus of cultural policy in relation to film audience development in the UK, our analysis examines relational, localised and sub-regional film cultures in order to understand how differing levels of film exhibition influence people's sense of place. This is framed within a discussion of cultural inequality more generally. In the UK, questions of engagement with different types of film exhibition have gained greater prominence recently, but there has been limited attention paid to how audiences understand their geographic relationship with film exhibition. Drawing on 200 semi-structured, qualitative interviews with a wide range of film viewers across four English regions, the North East, North West, South West and Yorkshire and the Humber, we assess perceptions of film exhibition in these regions. In doing so, we characterise five different modes of place in relation to the breadth of film exhibition, from distinctive film cities to mainstream multiplex towns. In particular, we focus on how access to film is simultaneously narrated through both localised proximity to cinemas of different types and virtual access to film through online platforms. This work provides further evidence of the uneven provision of diverse film in England but shows how film audiences relationally interpret their engagement within film as a cultural form

Multiple metachronous malignancies, one patient with three primary malignancies: a case report

We present a 61 year old Para 4 woman who presented with stage II Infiltrating lobular carcinoma of the breast after modified radical mastectomy. She was treated with Tamoxifen for seven years. She was diagnosed with multiple myeloma during year seven post mastectomy because of wrist pain. She was treated with melphalan, prednisone and allopurinol which she tolerated well and the pain in the wrist improved. Tamoxifen was also stopped. Ten months later she presented with vaginal bleeding and was diagnosed with a poorly differentiated endometrial adenocarcinoma at hysteroscopic suction curettage and had an abdominal hysterectomy. Two years later the patient succumbed to metastatic endometrial cancer

Using mixed-methods, a data model and a computational ontology in film audience research

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 it 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 sought to explore the richness of audience experiences and the broad audience 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 it 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