http://www.loc.gov/mods/v3 http://www.loc.gov/standards/mods/v3/mods-3-2.xsd
markets, morals, and the collective good
Healthcare has undergone major changes in personalization, marketization, and digitalization in recent decades. Through conceptual and empirical studies from a variety of healthcare contexts, this book explores the role of activists and civil society in defining and defending the collective good in healthcare and its changing landscape.
Cover -- Healthcare Activism: Markets, Morals, and the Collective Good -- Copyright -- Preface -- Note -- Contents -- List of Figures and Tables -- Figures -- Tables -- List of Contributors -- 1: Healthcare Activism, Marketization, and the Collective Good -- 1. Healthcare and Its Markets -- 2. Activists and Their Struggles for the Collective Good -- 3. Multiple Concerns-Multiple Goods? -- 4. Hearing Multiple Voices -- 5. Marketized and Personalized-Medical Science and the Collective Good -- 6. Defending the Collective Good in the Age of "Me" Medicine -- 7. This Book's Contributions
Acknowledgments -- Notes -- References -- 2: Preventing "Exit, " Eliciting "Voice": Patient, Participant, and Public Involvement as Invited Activism in Precision Medicine and Genomics Initiatives -- Introduction -- 1. Sharing (Genetic Data) in Contemporary Medicine: "Benefits" and "Costs" -- 1.1 Contemporary Medicine: Inclusive, Precise, Data-Fed -- 1.2 Sharing Genetic Data: Individual and Social Benefits -- 1.3 The Costs of Sharing Genetic Data -- 1.4 Called upon for Sharing Data: Weighing Up Costs and Benefits -- 2. Exit, Opt-Out, and Voice in Genomics Initiatives -- 2.1 Hirschman's Framework
2.2 Exit: Withdrawing versus Opting Out -- 2.3 Voice: Political and Costly -- 2.4 Loyalty: Participating for the Sake of Public Good? -- 3. Participatory Medicine -- 3.1 Switching from Exit to Voice -- 3.2 "Participants as Partners" -- 3.3 "Voice from Within and Voice from Without": Patient, Participant, and Public Involvement -- 4. Invited Activism -- Conclusion -- Acknowledgments -- References -- 3: War on Diseases: Patient Organizations' Problematization and Exploration of Market Issues -- Introduction -- 1. The Dynamics of Patient Organizations and Their Epistemic Role
1.1 The Rise of Experiential Knowledge in Early Groups of Patients and Disabled People -- 1.2 The Mobilization of Experiential Knowledge in the War on Diseases and the Emergence of "Evidence-Based Activism" -- 2. The Epistemic Work Undertaken by Rare Disease Patient Organizations on Economic Entities -- 2.1 Patient Organizations' Involvement in Therapeutic Development -- 2.2 Recalculating Costs, Redefining Diseases -- 2.3 Observing and Reforming Prices -- Conclusion -- Notes -- References
4: "Please Don't Put a Price on Our Lives": Social Media and the Contestation of Value in Ireland's Pricing of Orphan Drugs -- Introduction -- 1. The Role of Social Media in Healthcare Market Advocacy -- 1.1 The Increasing Role of the Market in Healthcare -- 1.2 Social Media and Healthcare Activism -- 2. Our Research -- 2.1 Orkambi -- 2.2 Spinraza -- 2.3 This Study -- 2.4 Study Context: The Assessment Process -- 3. Influence and Decision Making in Ireland's Drug Reimbursement Process -- 3.1 The YesOrkambi Campaign -- 3.1.1 The Role of Social Media in YesOrkambi -- 3.2 The SpinrazaNow Campaign
Includes bibliographical references and index.
Oxford : Oxford University Press USA - OSO, ©2021