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The Work of Patient Advocacy

Duana Fullwiley

in The Enculturated Gene: Sickle Cell Health Politics and Biological Difference in West Africa

Published in print:
2011
Published Online:
October 2017
ISBN:
9780691123165
eISBN:
9781400840410
Item type:
chapter
Publisher:
Princeton University Press
DOI:
10.23943/princeton/9780691123165.003.0007
Subject:
Anthropology, Social and Cultural Anthropology

This chapter further explores issues of patients' tenacity to shape science, through advocacy on an international level, and investigates the ways that making a disease public in Africa often entails ... More


FDA and the Rise of the Empowered Patient

Lewis A. Grossman

in FDA in the Twenty-First Century: The Challenges of Regulating Drugs and New Technologies

Published in print:
2015
Published Online:
May 2016
ISBN:
9780231171182
eISBN:
9780231540070
Item type:
chapter
Publisher:
Columbia University Press
DOI:
10.7312/columbia/9780231171182.003.0005
Subject:
Law, Medical Law

Although as recently as the 1970s patients had virtually no voice in FDA’s regulation of drugs, today patient advocates regularly use various administrative mechanisms to influence and even directly ... More


Assembling a New Kind of Person

Daniel Navon

in Mobilizing Mutations: Human Genetics in the Age of Patient Advocacy

Published in print:
2019
Published Online:
May 2020
ISBN:
9780226638096
eISBN:
9780226638126
Item type:
chapter
Publisher:
University of Chicago Press
DOI:
10.7208/chicago/9780226638126.003.0006
Subject:
History, History of Science, Technology, and Medicine

In order to illustrate how advocates are mobilizing mutations today, this chapter delves into the patient advocacy network organized around 22q11.2 Deletion Syndrome. Activists still face a range of ... More


Mobilizing Mutations: Human Genetics in the Age of Patient Advocacy

Daniel Navon

Published in print:
2019
Published Online:
May 2020
ISBN:
9780226638096
eISBN:
9780226638126
Item type:
book
Publisher:
University of Chicago Press
DOI:
10.7208/chicago/9780226638126.001.0001
Subject:
History, History of Science, Technology, and Medicine

Mobilizing Mutations shows how biomedical experts and patient advocates are using genetic testing to carve out new medical conditions and create powerful networks of research, care, and activism. For ... More


The Future for Genomic Designation and the New Prenatal Testing Landscape

Daniel Navon

in Mobilizing Mutations: Human Genetics in the Age of Patient Advocacy

Published in print:
2019
Published Online:
May 2020
ISBN:
9780226638096
eISBN:
9780226638126
Item type:
chapter
Publisher:
University of Chicago Press
DOI:
10.7208/chicago/9780226638126.003.0010
Subject:
History, History of Science, Technology, and Medicine

What is the future for genomic designation? The first half of this chapter shows how next generation sequencing, new genomics databases, and social media have allowed researchers and advocates to ... More


Initiators, Controllers, and Influencers: Enacting Patient Advocacy Roles in Cervical Cancer Screening Policy Practices

Lisa Lindén

in Healthcare Activism: Markets, Morals, and the Collective Good

Published in print:
2021
Published Online:
October 2021
ISBN:
9780198865223
eISBN:
9780191897603
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780198865223.003.0006
Subject:
Business and Management, Public Management

This chapter looks at how patient advocates have intervened in cervical cancer policies to promote and enact the HPV test as the new “right tool for the job” in cervical cancer screening. By drawing ... More


What can patients and patient groups do to promote shared decision making?

Kristin L. Carman, Thomas A. Workman, and Marla L. Clayman

in Shared Decision Making in Health Care: Achieving evidence-based patient choice

Published in print:
2016
Published Online:
September 2016
ISBN:
9780198723448
eISBN:
9780191790096
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/acprof:oso/9780198723448.003.0042
Subject:
Public Health and Epidemiology, Public Health, Epidemiology

At a time when patient and family engagement in health care is rapidly expanding, patients and patient advocacy groups have increasing opportunities to advance shared decision making (SDM). We ... More


Disease Constituencies

Rachel Kahn Best

in Common Enemies: Disease Campaigns in America

Published in print:
2019
Published Online:
August 2019
ISBN:
9780190918408
eISBN:
9780190918446
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780190918408.003.0003
Subject:
Sociology, Social Movements and Social Change, Health, Illness, and Medicine

In the second half of the twentieth century, disease advocacy evolved from universal campaigns to patients’ constituencies. Changes in the experience of health and illness and the nationwide ... More


The Politics of Self-Medication

Jessica Flanigan

in Pharmaceutical Freedom: Why Patients Have a Right to Self Medicate

Published in print:
2017
Published Online:
August 2017
ISBN:
9780190684549
eISBN:
9780190684570
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780190684549.003.0005
Subject:
Philosophy, Political Philosophy

Patients can advocate for rights of self-medication in several ways. First, patients should be included in the process of drug development and should not be prohibited from developing and testing ... More


The politics of trans health: negotiating credible knowledge

Ruth Pearce

in Understanding Trans Health: Discourse, Power and Possibility

Published in print:
2018
Published Online:
January 2019
ISBN:
9781447342335
eISBN:
9781447342380
Item type:
chapter
Publisher:
Policy Press
DOI:
10.1332/policypress/9781447342335.003.0006
Subject:
Sociology, Gender and Sexuality

This chapter analyzes ‘epistemic politics’: that is, the politics of knowledge production. It focuses particularly on the process of trans patient advocacy, looking at how individual interventions ... More


The Sjögren’s Foundation: The Patients’ and Professionals’ Key Resource and Advocate

Janet E. Church

in The Sjögren's Book

Published in print:
2022
Published Online:
May 2022
ISBN:
9780197502112
eISBN:
9780197650417
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780197502112.003.0001
Subject:
Psychology, Health Psychology

Founded in 1983, the Sjögren’s Foundation is the only nonprofit organization in the United States that has Sjögren’s disease as its sole focus. The efforts of the Sjögren’s Foundation are targeted to ... More


Emergency Medicine

Lisa Moreno-Walton

in First Do No Self Harm: Understanding and Promoting Physician Stress Resilience

Published in print:
2013
Published Online:
January 2014
ISBN:
9780195383263
eISBN:
9780199344871
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/acprof:oso/9780195383263.003.0024
Subject:
Social Work, Health and Mental Health

Lisa Moreno-Walton, a Tulane University emergency physician, associate professor and medical educator, writes about her profession in Chapter 24, addressing three fundamental questions. Why do ... More


Structures

Allan M Cyna and Marion I Andrew

in Handbook of Communication in Anaesthesia & Critical Care: A Practical Guide to Exploring the Art

Published in print:
2010
Published Online:
November 2020
ISBN:
9780199577286
eISBN:
9780191917912
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780199577286.003.0008
Subject:
Clinical Medicine and Allied Health, Anesthesiology

Anaesthetic culture tends to view patients as physiological specimens to which pharmacological and technical procedures are applied and utilized to optimize various measurable parameters. However, ... More


Physicians as Bellwethers

Susan Dorr Goold

in Fair Resource Allocation and Rationing at the Bedside

Published in print:
2014
Published Online:
November 2014
ISBN:
9780199989447
eISBN:
9780190207489
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/acprof:oso/9780199989447.003.0022
Subject:
Philosophy, Moral Philosophy

This chapter examines the value of physicians’ experience in calling attention to rationing and its effects on the practice of medicine and the quality of patient care. Physicians’ position in direct ... More


Working Effectively as Part of a Team

David Metcalfe and Harveer Dev

in Oxford Assess and Progress: Situational Judgement Test

Published in print:
2018
Published Online:
November 2020
ISBN:
9780198805809
eISBN:
9780191917219
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780198805809.003.0024
Subject:
Clinical Medicine and Allied Health, Professional Development in Medicine

Teamworking is an inevitable part of working within a complex multidisciplinary environment. Thankfully, most interactions with other members of the healthcare team will be positive and ... More


Race, Difference, and Genes

Myles W. Jackson

in The Genealogy of a Gene: Patents, HIV/AIDS, and Race

Published in print:
2015
Published Online:
September 2015
ISBN:
9780262028660
eISBN:
9780262327190
Item type:
chapter
Publisher:
The MIT Press
DOI:
10.7551/mitpress/9780262028660.003.0008
Subject:
History, History of Science, Technology, and Medicine

This chapter situates the CCR5 gene, specifically the Δ‎32 allele, in the contexts of four distinct yet related enterprises- race and genomics, Big Pharma, personalized medicine, and personal ... More


The revolution of personalized medicine is already upon us in rare diseases

Christopher P. Austin

in Can precision medicine be personal; Can personalized medicine be precise?

Published in print:
2022
Published Online:
April 2022
ISBN:
9780198863465
eISBN:
9780191895913
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780198863465.003.0009
Subject:
Public Health and Epidemiology, Public Health, Epidemiology

Personalized medicine remains an aspirational future state for the majority of diseases, but is the present state for rare diseases. As a result, the principles, practices, potential, and perils of ... More


Personal Experiences of Individuals with Aniridia

Jessica J. Otis

in Aniridia and WAGR Syndrome: A Guide for Patients and Their Families

Published in print:
2010
Published Online:
November 2020
ISBN:
9780195389302
eISBN:
9780197562727
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780195389302.003.0008
Subject:
Clinical Medicine and Allied Health, Ophthalmology

Editor’s Note: Since not much was known about aniridia for many years some doctors did medical procedures that we now know should not be done on aniridic eyes. Please do not use any specific story ... More


Inspirations

Jessica J. Otis

in Aniridia and WAGR Syndrome: A Guide for Patients and Their Families

Published in print:
2010
Published Online:
November 2020
ISBN:
9780195389302
eISBN:
9780197562727
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780195389302.003.0006
Subject:
Clinical Medicine and Allied Health, Ophthalmology

This chapter is a collection of stories from those who do not let anything keep them from achieving their goals and who inspire us. These individuals show us there is hope and that anything is ... More


Medicine

Shannon Brownlee

in A Field Guide for Science Writers

Published in print:
2005
Published Online:
November 2020
ISBN:
9780195174991
eISBN:
9780197562239
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780195174991.003.0030
Subject:
Computer Science, History of Computer Science

Medical writers have gone through a period of soul searching, a reappraisal of our role as journalists and members of the fourth estate. Are we supposed to simply cover the medical news: the new ... More


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