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Self-organised user groups of social and health care services are playing an increasingly significant part within systems of local governance. Based on detailed empirical work looking at the user and 'official' perspective, this report includes studies of user groups and officials in two policy areas - mental health and disability. The authors examine both the strategies user groups adopt to seek their objectives, and explore conceptual issues relating to notions of consumerism and citizenship. Unequal partners thus contributes to our understanding of the role of user self-organisation in empowering people as consumers, and in enabling excluded people to become 'active' citizens. The authors discuss the way in which self-organisation may be supported without being controlled by officials in statutory agencies, highlighting the need to understand and distinguish between user self-organisation and user involvement. The report concludes that if policy makers are genuinely committed to greater user involvement in design, planning and delivery of services, then user self-organisation needs to be both encouraged and supported materially, without being 'captured' or incorporated into management. The research points to the significance of 'user groups' in challenging the exclusion of disabled citizens from all aspects of social, economic, political and cultural life. Unequal partners is essential reading for health and social care policy makers and practitioners, lobby and pressure groups, students and academics in health and social policy and local government studies, and users.
As individuals increasingly seek ways of accessing, understanding and sharing data about their own bodies, this book offers a critique of the popular claim that 'more information' equates to 'better health'. In a study that redefines the public, academic and policy related debates around health, bodies, information and data, the authors consider the ways in which the phenomenon of self-diagnosis has created alternative worlds of knowledge and practises which are often at odds with professional medical advice. With a focus on data that concerns significant life changes, this book explores the potential challenges related to people's changing relationships with traditional health systems as access to, and control over, data shifts.
What is at stake socially, culturally, politically, and economically when we routinely use technology to gather information about our bodies and environments? Today anyone can purchase technology that can track, quantify, and measure the body and its environment. Wearable or portable sensors detect heart rates, glucose levels, steps taken, water quality, genomes, and microbiomes, and turn them into electronic data. Is this phenomenon empowering, or a new form of social control? Who volunteers to enumerate bodily experiences, and who is forced to do so? Who interprets the resulting data? How does all this affect the relationship between medical practice and self care, between scientific and lay knowledge? Quantified examines these and other issues that arise when biosensing technologies become part of everyday life. The book offers a range of perspectives, with views from the social sciences, cultural studies, journalism, industry, and the nonprofit world. The contributors consider data, personhood, and the urge to self-quantify; legal, commercial, and medical issues, including privacy, the outsourcing of medical advice, and self-tracking as a "paraclinical" practice; and technical concerns, including interoperability, sociotechnical calibration, alternative views of data, and new space for design. Contributors Marc Boehlen, Geoffrey C. Bowker, Sophie Day, Anna de Paula Hanika, Deborah Estrin, Brittany Fiore-Gartland, Dana Greenfield, Judith Gregory, Mette Kragh-Furbo, Celia Lury, Adrian Mackenzie, Rajiv Mehta, Maggie Mort, Dawn Nafus, Gina Neff, Helen Nissenbaum, Heather Patterson, Celia Roberts, Jamie Sherman, Alex Taylor, Gary Wolf
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