42 research outputs found
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 networksâ own narratives evoke. This kind of failure can create peculiar scenarios, such as the emergence of the âdigital orphansâ 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 Unionâs Seventh Framework Programme (FP7/2007â2013)/ERC grant agreement number 335925, and the German Federal Ministry of Education and Research (grant number 01GP1311
New games, new rules: big data and the changing context of strategy
Big data and the mechanisms by which it is produced and disseminated introduce important changes in the ways information is generated and made relevant for organizations. Big data often represents miscellaneous records of the whereabouts of large and shifting online crowds. It is frequently agnostic, in the sense of being produced for generic purposes or purposes different from those sought by big data crunching. It is based on varying formats and modes of communication (e.g., texts, image and sound), raising severe problems of semiotic translation and meaning compatibility. Crucially, the usefulness of big data rests on their steady updatability, a condition that reduces the time span within which this data is useful or relevant. Jointly, these attributes challenge established rules of strategy making as these are manifested in the canons of procuring structured information of lasting value that addresses specific and long-term organizational objectives. The developments underlying big data thus seem to carry important implications for strategy making, and the data and information practices with which strategy has been associated. We conclude by placing the understanding of these changes within the wider social and institutional context of longstanding data practices and the significance they carry for management and organizations
Actor-Network Theory and its role in understanding the implementation of information technology developments in healthcare
<p>Abstract</p> <p>Background</p> <p>Actor-Network Theory (ANT) is an increasingly influential, but still deeply contested, approach to understand humans and their interactions with inanimate objects. We argue that health services research, and in particular evaluations of complex IT systems in health service organisations, may benefit from being informed by Actor-Network Theory perspectives.</p> <p>Discussion</p> <p>Despite some limitations, an Actor-Network Theory-based approach is conceptually useful in helping to appreciate the complexity of reality (including the complexity of organisations) and the active role of technology in this context. This can prove helpful in understanding how social effects are generated as a result of associations between different actors in a network. Of central importance in this respect is that Actor-Network Theory provides a lens through which to view the role of technology in shaping social processes. Attention to this shaping role can contribute to a more holistic appreciation of the complexity of technology introduction in healthcare settings. It can also prove practically useful in providing a theoretically informed approach to sampling (by drawing on informants that are related to the technology in question) and analysis (by providing a conceptual tool and vocabulary that can form the basis for interpretations). We draw on existing empirical work in this area and our ongoing work investigating the integration of electronic health record systems introduced as part of England's National Programme for Information Technology to illustrate salient points.</p> <p>Summary</p> <p>Actor-Network Theory needs to be used pragmatically with an appreciation of its shortcomings. Our experiences suggest it can be helpful in investigating technology implementations in healthcare settings.</p
The quality of evidence in knowledge management research: practitioner versus scholarly literature
Toward model-based big data-as-a-service: The TOREADOR approach
The full potential of Big Data Analytics (BDA) can be unleashed only by overcoming hurdles like the high architectural complexity and lack of transparency of Big Data toolkits, as well as the high cost and lack of legal clearance of data collection, access and processing procedures. We first discuss the notion of Big Data Analytics-as-a-Service (BDAaaS) to help potential users of BDA in overcoming such hurdles. We then present TOREADOR, a first approach to BDAaaS