Digital orphans: Data closure and openness in patient- powered networks

This is the author accepted manuscript. The final version is available from Palgrave Macmillan via the DOI in this record.In this paper, we discuss an issue linked to data-sharing regimes in patient-powered, social-media-based networks, namely that most of the data that patient users share are not used to research scientific issues or the patient voice. This is not a trivial issue, as participation in these networks is linked to openness in data sharing, which would benefits fellow patients and contributes to the public good more generally. Patient-powered research networks are often framed as disrupting research agendas and the industry. However, when data that patients share are not accessible for research, their epistemic potential is denied. The problem is linked to the business models of the organisations managing these networks: models centred on controlling patient data tend to close networks with regard to data use. The constraint on research is at odds with the ideals of a sharing, open and supportive epistemic community that networks’ own narratives evoke. This kind of failure can create peculiar scenarios, such as the emergence of the ‘digital orphans’ of Internet research. By pointing out the issue of data use, this paper informs the discussion about the capacity of patient-powered networks to support research participation and the patient voice.We are indebted to the anonymous reviewers and the editor, who with their supportive and constructive comments helped us to better clarify and highlight the argument of the article. We would like to also thank friends and colleagues who have offered valuable comments and suggestions on early drafts of this paper. We would like to especially thank Barbara Prainsack, Sabina Leonelli, Alena Buyx, and David Teira. This research is funded by the European Research Council (ERC) under the European Union’s Seventh Framework Programme (FP7/2007–2013)/ERC grant agreement number 335925, and the German Federal Ministry of Education and Research (grant number 01GP1311

Audiences’ coping practices with intrusive interfaces : researching audiences in algorithmic, datafied, platform societies

People in their role as audiences are increasingly confronted with intrusive digital media technologies that seek to collect personal data, shape people’s media experiences through algorithms and increasingly work towards establishing what is already being called a platform society. This tendency will become even more pertinent in the near future with the Internet of Things permeating many more aspects of our everyday lives. Software interfaces are thus becoming important objects of scientific inquiry. However, even though in their materiality interfaces promote very specific forms of media practices, people’s sense-making and interpretations still need to be considered as part of future audience research. In this context, we propose the idea of audiences’ coping practices when facing intrusive media interfaces in their exploitive, formative, ubiquitous and excluding character. By juxtaposing coping practices with intrusive media we sketch current and projected trends in audience research that focus on the power behind intrusive media on the one side and on people’s sense-making on the other side

Women entrepreneurship and digital technologies: towards a research agenda

Purpose The aim of this paper is underline how the new emerging digital technologies could be of great value in expanding the opportunities for women entrepreneurship by supporting them in overcoming the constrains they face as well as in creating more favorable network environment. This is creating the conditions for a new phenomenon called Digital Women Entrepreneurship. Methodology A qualitative literature review in relation to women entrepreneurship activities and the emergence of digital technologies is performed. Findings Specifically the contribution and the impact provided by the Digital Technologies will be analyzed for women entrepreneurship. A holistic interpretative framework for analyzing Digital Women Entrepreneurship is proposed. A conceptual discussion on how the Digital Technologies opportunities could be valuable in overcoming some of the constrains women tackle in their entrepreneurship process and which are the main research streams that emerge for future investigation on the theme. Originality/value Even if the literature on Women Entrepreneurship is well covered, to our best knowledge the intersection between the two fields remains unexplored. The paper provides a contribution in this direction, identifying new trends and future directions for research. Practical implications The major implication is to advance knowledge and practice in the area of gender in management and use of Digital Technologies by focusing upon empirical research, theoretical developments, practice and current issues. Benefits are related to a better understanding of the debate on “Gender and Management” themes by reconsidering networking activities with social media

Material conflict: MOOCs and institutional logics in business education

Although the notion of incompatibility is implicit in the research on conflicting institutional logics, few studies explicitly address it. The chapter draws on the concept of materiality and theories of digital objects to explain how materiality affects the organizational templates and reasons for the conflict. The chosen context of Massive Open Online Course (MOOCS) contradicts the conventional organizing templates in business schools (BS) but it emerges a powerful force regardless. The focus on digital materiality helps us to elaborate the role of materiality in institutional logics. By juxtaposing and reconciling the substance of the physical mater and the substantive mattering of matter, the chapter enhances the definition and the theoretical boundaries of the concept

Digital sustainability: basic conditions for sustainable digital artifacts and their ecosystems

The modern age has heralded a shift from the industrial society, in which natural resources are crucial input factors for the economy, towards a knowledge society. To date, sustainability literature has treated knowledge—and in particular digital artifacts—mainly as a means to the end of achieving sustainable development. In this conceptual paper, we argue that digital artifacts themselves ought also to be considered as resources, which also need to be sustainable. While over-consumption is a problem facing natural resources, with sustainable digital artifacts, underproduction, and underuse are the biggest challenges. In our view, the sustainability of digital artifacts improves their potential impact on sustainable development. A theoretical foundation for digital artifacts and their ecosystem allows us to present the relevant research on digital information, knowledge management, digital goods, and innovation literature. Based on these insights, we propose ten basic conditions for sustainable digital artifacts and their ecosystem to ensure that they provide the greatest possible benefit for sustainable development. We then apply those characteristics to four exemplary cases: Linux kernel development, Bitcoin cryptocurrency, the Wikipedia project, and the Linking Open Drug Data repositories. The paper concludes with a research agenda identifying topics for sustainability scholars and information systems academics, as well as practitioners. A number of suggestions for future studies on digital sustainability are also put forward