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Full Description
What is the role of activists and civil society in defining and defending the collective good in healthcare, especially in cases where that good seems to be heavily shaped by market dynamics? Presenting conceptual and empirical studies from a variety of healthcare contexts and theoretical perspectives, this book addresses this vital question by drawing together multidisciplinary scholarship from Science and Technology Studies, Sociology, Organisation Studies, Marketing, Philosophy, and Public Health.
Healthcare has undergone three major changes over the past decades: the advent of personalized medicine, the marketization of public care systems, and the digitalization of healthcare services. This book maps these changes and illustrates the extent to which they are interlinked to produce a seemingly unstoppable move toward individualization in healthcare. The book also highlights the tensions and challenges arising from these interlinkages, and traces how activists react to these tensions to argue for and defend the common good. It thus sketches a multifaceted picture of healthcare activism in the 21st century as civil society responds to these dynamics at the crossroads of markets and morals, economic and social justifications, individual and collective, and digital and non-digital worlds. Crucially, it also highlights potential solutions for heightening patient voices and broadening participation in healthcare markets in a post Covid-19 world.
Contents
1: Susi Geiger: Healthcare Activism, Marketization, and the Collective Good
2: Ilaria Galasso and Susi Geiger: Preventing "Exit", Eliciting "Voice": Patient, Participant, and Public Involvement as Invited Activism in Precision Medicine and Genomics Initiatives
3: Vololona Rabeharisoa and Liliana Doganova: War on Diseases: Patient Organizations' Problematization and Exploration of Market Issues
4: Gillian Moran and Nicola Mountford: "Please Don't Put a Price on Our Lives": Social Media and the Contestation of Value in Ireland's Pricing of Orphan Drugs
5: Klaus Hoeyer and Henriette Langstrup: Datafying the Patient Voice: The Making of Pervasive Infrastructures as Processes of Promise, Ruination, and Repair
6: Lisa Lindén: Initiators, Controllers and Influencers: Enacting Patient Advocacy Roles in Cervical Cancer Screening Policy Practices
7: Mohammed Cheded and Gillian Hopkinson: Heroes, Villains, and Victims: Tracing Breast Cancer Activist Movements
8: Samantha D. Gottlieb: The Fantastical Empowered Patient
9: Barbara Prainsack and Hendrik Wagenaar: Markets, Morals, and the Collective Good after Covid-19
