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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.
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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