9,901 research outputs found

    Visions and Challenges in Managing and Preserving Data to Measure Quality of Life

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    Health-related data analysis plays an important role in self-knowledge, disease prevention, diagnosis, and quality of life assessment. With the advent of data-driven solutions, a myriad of apps and Internet of Things (IoT) devices (wearables, home-medical sensors, etc) facilitates data collection and provide cloud storage with a central administration. More recently, blockchain and other distributed ledgers became available as alternative storage options based on decentralised organisation systems. We bring attention to the human data bleeding problem and argue that neither centralised nor decentralised system organisations are a magic bullet for data-driven innovation if individual, community and societal values are ignored. The motivation for this position paper is to elaborate on strategies to protect privacy as well as to encourage data sharing and support open data without requiring a complex access protocol for researchers. Our main contribution is to outline the design of a self-regulated Open Health Archive (OHA) system with focus on quality of life (QoL) data.Comment: DSS 2018: Data-Driven Self-Regulating System

    Making sense of wearables:new-emerging markets and mediascapes

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    This document reports on the events of the networking/embedding event, organised by the Epinet WP3 team in Brussels Nov 2013. It summarises observations and key findings. The aim of the event was to involve the expertise of professionals from a range public and private agencies involved in the development of wearable sensor technologies and ICT innovation policy. We learn from their input of new-emerging roles for wearable sensors, how they are situated in visions of the future of healthcare and self care, of changing lifestyles and occupations. We learn of complications in clinical practice and in medical devices regulation. We learn of expectations, of what personalisation can stand for, of conceptions of behaviour and of well-being more generally. Finally, we observe a distinct disconnect between top-down policy developments on the future delivery of personalised healthcare to European citizens and grass-roots developments in self care and in the self-management of medical conditions. The results of this consultation are key to finalising the embedding stage of the case study on wearable sensors, and they provide major input into our attempts to integrating the many different assessments of this innovation domain

    Never Mind the Data: The Legal Quest Towards Propertisation of Big Data.

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    The paper discusses the theory of “propertization of data”, namely the proposition that data can be owned and constitute one’s property, in the light of big data and the quantified self (QS) movement. Can we really own our own data? Part 1 discusses the issue of commodification of personal data and part 2 dissects this further by examining how personal data is treated at each stage of the big data processing cycle. Parts 3 and 4 complete the argument put forth here, namely that raw data – once seen out of context and as a part of a dataset can indeed be considered as property, able to be owned and traded

    Quantified vehicles: data, services, ecosystems

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    Advancing digitalization has shown the potential of so-called Quantified Vehicles for gathering valuable sensor data about the vehicle itself and its environment. Consequently, (vehicle) Data has become an important resource, which can pave the way to (Data-driven) Services. The (Data-driven Service) Ecosystem of actors that collaborate to ultimately generate services, has only shaped up in recent years. This cumulative dissertation summarizes the author's contributions and includes a synopsis as well as 14 peer-reviewed publications, which contribute to answer the three research questions.Die Digitalisierung hat das Potenzial für Quantified Vehicles aufgezeigt, um Sensordaten über das Fahrzeug selbst und seine Umgebung zu sammeln. Folglich sind (Fahrzeug-)Daten zu einer wichtigen Ressource der Automobilindustrie geworden, da sie auch (datengetriebene) Services ermöglichen. Es bilden sich Ökosysteme von Akteuren, die zusammenarbeiten, um letztlich Services zu generieren. Diese kumulative Dissertation fasst die Beiträge des Autors zusammen und enthält eine Synopsis sowie 14 begutachtete Veröffentlichungen, die zur Beantwortung der drei Forschungsfragen beitragen

    Digital Twins in Healthcare for Citizens

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    Digital twins are gaining attention in healthcare, especially in fields like hospital management, simulating surgeries, or providing personalized health. As digital replicas based on users' data, digital twins can inform citizens in-depth about their lifestyle, medical data, and biomedical data. Hence, there is the assumption that digital twins could facilitate preventative healthcare at home, bringing healthcare closer to citizens, yet there are underexamined ethical concerns. In this paper, we explore the ethics of digital twins based on citizens' perspectives on digital twins in healthcare via recent literature and research. Although digital twins have great potential, citizens have concerns about surveillance, data ownership, data accuracy, and personal and collective agency

    Defending children’s rights minding children’s privacy and development in light of the general data protection regulation

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    The law has always recognized children’s special needs for protection. Children are vulnerable also in relation to the processing of their data, since they are less aware of risks emerging from data processing. The new General Data Protection Regulation (General Data Protection Regulation 2016 (EU), GDPR) has strengthened children’s safety. Higher transparency standards are now required. Any information offered should be in a clear language that the child can easily understand. The right to be forgotten is reinforced when a child has given her consent to data processing, but later wishes to withdraw this consent. Children’s rights and freedoms may override the interests of the controller and could render processing unlawful. Minors below the age of 16 can consent only via a parent. This chapter focuses on challenges posed by the new GDPR (General Data Protection Regulation 2016 (EU)) and on potential benefits for children’s rights to data protection.info:eu-repo/semantics/publishedVersio

    Vortex of the Web. Potentials of the online environment

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    This volume compiles international contributions that explore the potential risks and chances coming along with the wide-scale migration of society into digital space. Suggesting a shift of paradigm from Spiral of Silence to Nexus of Noise, the opening chapter provides an overview on systematic approaches and mechanisms of manipulation – ranging from populist political players to Cambridge Analytica. After a discussion of the the juxtaposition effects of social media use on social environments, the efficient instrumentalization of Twitter by Turkish politicans in the course of the US-decision to recognize Jerusalem as Israel’s capital is being analyzed. Following a case study of Instagram, Black Lives Matter and racism is a research about the impact of online pornography on the academic performance of university students. Another chapter is pointing out the potential of online tools for the successful relaunch of shadow brands. The closing section of the book deals with the role of social media on the opinion formation about the Euromaidan movement during the Ukrainian revolution and offers a comparative study touching on Russian and Western depictions of political documentaries in the 2000s
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