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Testing Knowledge : Toward an Ecology of Diagnosis, Preceded by the Dingdingdong Manifesto
Authors: ---
Year: 2021 Publisher: Brooklyn, NY punctum books

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"This volume presents the collective adventure of Dingdingdong, the Institute for the Co-production of Knowledge about Huntington’s Disease, founded in 2012 between Paris and Brussels.Katrin Solhdju’s Testing Knowledge: Toward an Ecology of Diagnosis pursues the question of taming the violence of the new species of medical foreknowledge represented by genetic testing. Adopting historical and epistemological perspectives on diagnostic situations, including observations from anthropological field research, speculative storytelling, and ancient oracles, Testing Knowledge proposes a new ecology of predictive diagnostic gestures, which potentially concern us all.Testing Knowledge is preceded by the Dingdingdong collective’s Manifesto (2013), which tells the story of the young Alice Rivières, who in 2006 took the presymptomatic, genetic test, foretelling her that she will eventually develop Huntington’s. Her first-person account of the revelation of her test results, which she experienced as an act of poisoning or cursing, pulls the reader into the manifold ethical, psychological, and existential issues inherent to medical predictions.Testing Knowledge is also preceded by a foreword from Alice Wexler, author of Mapping Fate: A Memoir of Family, Risk, and Genetic Research, and is followed by an afterword by philosopher Isabelle Stengers."


Book
Organising care around patients : stories from the frontline of the NHS
Authors: ---
ISBN: 1526147440 1526147459 Year: 2021 Publisher: Manchester : Manchester University Press,

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Healthcare aims to be patient-centred but a large gap remains between the fine words and the reality. Care often feels designed for the convenience of the organisations that deliver it, and not enough around patients and their families, or even around the frontline staff who provide it. Why does this happen? What does it feel like? What can be done about it? This book stimulates reflection on these questions by listening closely to those at the frontline. It provides accounts from patients, carers and healthcare professionals who are patients about what it's like when services get it right, and wrong, from birth up to the end of life. Quite simply, we want to draw upon the power of storytelling - which is increasingly valued as a tool for learning - to help policymakers and practitioners to understand how to deliver better care. We also hope to enlighten the general reader about how they might go about navigating "the system" while it remains imperfect. There is a growing literature of first-person accounts from patients and from healthcare professionals. This book differs by providing a collection of narratives of experiences of the NHS in England to paint a rich and varied picture. Alongside these narratives we provide some international context, and an overview of the history of moves towards a more patient-centred approach to care. We present the theory and practice of storytelling in the context of healthcare. We also seek to help the reader to draw out the practical learning from the individual accounts.


Periodical
Patient intelligence.
ISSN: 11793198 Year: 2009 Publisher: [Auckland, NZ] : Dove Medical Press,

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Periodical
Health expectations
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ISSN: 13696513 13697625 Publisher: Oxford

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Keywords

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