scholarly journals Medical Disturbances as a Form of Patient Activism in China?

2021 ◽  
Vol 5 (3) ◽  
pp. 26-29
Author(s):  
Xiao Tan ◽  
Tianyang Liu
Keyword(s):  
Patient Activism

Biomedical Odysseys

2017 ◽  
Author(s):  
Priscilla Song
Keyword(s):  
Surgical Intervention ◽  
Border Crossing ◽  
Biomedical Science ◽  
Experimental Medicine ◽  
Fetal Cell ◽  
Cell Therapies ◽  
Anthropology Of Science ◽  
Innovative Methods ◽  
Science Technology ◽  
Patient Activism

Thousands of people from more than eighty countries have traveled to China since 2001 to undergo fetal cell transplantation. Galvanized by the potential of stem and fetal cells to regenerate damaged neurons and restore lost bodily functions, people grappling with paralysis and neurodegenerative disorders have ignored the warnings of doctors and scientists back home in order to stake their futures on a Chinese experiment. This book looks at why and how these individuals have entrusted their lives to Chinese neurosurgeons operating at the forefront of experimental medicine, in a world where technologies and risks move faster than laws can keep pace. The book shows how cutting-edge medicine is not just about the latest advances in biomedical science but also encompasses transformations in online patient activism, surgical intervention, and borderline experiments in health care bureaucracy. The book opens up important theoretical and methodological horizons in the anthropology of science, technology, and medicine. It illuminates how poignant journeys in search of fetal cell cures become tangled in complex webs of digital mediation, the entrepreneurial logics of postsocialist medicine, and fraught debates about the ethics of clinical experimentation. Using innovative methods to track the border-crossing quests of Chinese clinicians and their patients from around the world, the book maps the transnational life of fetal cell therapies.

scholarly journals Patient-made Long Covid changed COVID-19 (and the production of science, too)

2021 ◽  
Author(s):  
Elisa Perego ◽  
Felicity Callard
Keyword(s):  
Grey Literature ◽  
Medical Knowledge ◽  
Scientific Production ◽  
Visual Narratives ◽  
Quantitative And Qualitative Research ◽  
Policy Interventions ◽  
Wide Range ◽  
Patient Activism ◽  
Disease Pathways

Background: Significant knowledge about long-term symptoms following SARS-CoV-2 infection has been produced by patients, which made Long Covid. Objective: To document and analyse such knowledge, outline how it changed understanding of COVID-19, and specify ethical and socio-political challenges associated with its development.Methods: Analysis of publicly available materials on Long Covid by people with Long Covid, largely in English and Italian, and across media and genre. Results: Those with Long Covid have made epistemic contributions across multiple media, including: oral, written and visual narratives, testimonies and arguments; quantitative and qualitative research; grey literature, essays, opinion pieces and commentaries; and advocacy and policy interventions. Discussion: Patient knowledge contributed to shifting assumptions concerning COVID-19 symptoms and disease pathways; phasing and duration; classification and naming of illness; disease morbidity; and who is affected. Patients’ use of a wide range of media challenged the conventional scientific production of epistemic claims. Many ethical and political challenges lie ahead, including exploitation of patients, their knowledge, and their data.Conclusions: Long Covid patient activism and research have been instrumental to key epistemic shifts that have changed understandings of COVID-19. They have also changed – possibly permanently – how science and medical knowledge are produced. Patient expertise must be routinely integrated into medicine beyond the current pandemic. We also need to ensure the ethical use of patient-led expertise and patient-produced data in Long Covid. Patient contribution: Both authors are patients and researchers with Long Covid, who have contributed to making ‘Long Covid', and to advocacy around its definition and recognition.

Enacting Divides

2017 ◽  
Vol 9 (1) ◽  
pp. 13-23
Author(s):  
Ina Dimitrova
Keyword(s):  
Network Architecture ◽  
Assisted Reproductive Technologies ◽  
Reproductive Technologies ◽  
Online Discussions ◽  
Media Representations ◽  
Local Context ◽  
Current State ◽  
Patient Activism

Th? paper aims to explore the current state of a particular instance of patient activism in Bulgaria through tracing the sociotechnical network architecture of the assisted reproductive technologies. It argues that in the local context this is the patient activism, which could be assessed as successful or, in ANT's terms, it has forged heterogeneous alliances, able to sustain themselves, proliferate and enroll new protagonists. Based on interviews with patients and activists, on media representations, and online discussions, this research tries to trace the local heterogeneous arrays of protagonists and show how ARTs network successfully stabilizes and gains power.

Triumph and Tragedy

2016 ◽  
Author(s):  
Michael Kinch
Keyword(s):  
Resource Availability ◽  
National Institutes Of Health ◽  
Research Organization ◽  
Industry Growth ◽  
Modern Times ◽  
History Of ◽  
Patient Activism ◽  
Deadly Disease ◽  
Hiv Aids

Industry growth mirrored innovation taking place in all aspects of understanding disease and ways to ameliorate it. All of this knowledge was needed to tackle the most deadly disease of modern times, HIV/AIDS. The surprisingly old history of a modern disease is related as well as the role that a key research organization, the National Institutes of Health (NIH), played in combatting the deadly virus. We also demonstrate how serendipity intervened in the form of a set of failed cancer medicines developed by a Detroit scientist years before AIDS was widely recognized. The discovery and advancement of pain-relieving medicines, from aspirin to Vioxx, is related. The triumphs and tragedies of these needed medicines fave rise to patient activism and critique of the FDA, some of which reflects an imbalance between resource availability and reactions to over- and under-regulation.

scholarly journals Legitimate suffering: a case of belonging and sickle cell trait in Brazil

BioSocieties ◽  
2021 ◽  
Author(s):  
Melissa Creary
Keyword(s):  
Lived Experience ◽  
Sickle Cell ◽  
Blood Cells ◽  
Sickle Cell Trait ◽  
Genetic Disorder ◽  
The Other ◽  
Patient Organization ◽  
Cell Disease ◽  
Racial Inequalities ◽  
Patient Activism

AbstractPatient activism organizations are formed around and seek legitimacy via both biological and biographical identities (Fassin, in: Theory Cult Soc 26(5):44–60, 2009). In the case of sickle cell disease (SCD) in Brazil, two different modes of suffering authenticate the lived experience—one is based on the disease state, the other is based on the ways in which racial inequalities and disadvantage contribute to its own suffering while also entangled with disease-based suffering. SCD is a rare genetic disorder that affects red blood cells and whose hallmark symptom is pain. This paper places an ethnographic focus on the failed mobilization of suffering by an organization leader in attempts to make claims for inclusion. The leader’s social and biological identities of mother, sickle cell trait carrier, middle class, and mulata disrupted biosocial cohesion. This disruption reveals a hierarchy of suffering, where some indices of suffering are delegitimized. This hierarchy illuminates how exclusion and representation work within a patient organization whose membership embody both physical and social distress.

Sign in / Sign up

Export Citation Format

Share Document