Patients as Policy Actors

✍ Scribed by Beatrix Hoffman (editor), Nancy Tomes (editor), Rachel Grob (editor), Mark Schlesinger (editor)

• Publisher: Rutgers University Press
• Year: 2011
• Tongue: English
• Leaves: 319
• Series: Critical Issues in Health and Medicine
• Edition: 1
• Category: Library

✦ Synopsis

Patients as Policy Actors offers groundbreaking accounts of one of the health field's most important developments of the last fifty years--the rise of more consciously patient-centered care and policymaking. The authors in this volume illustrate, from multiple disciplinary perspectives, the unexpected ways that patients can matter as both agents and objects of health care policy yet nonetheless too often remain silent, silenced, misrepresented, or ignored. The volume concludes with a unique epilogue outlining principles for more effectively integrating patient perspectives into a pluralistic conception of policy-making. With the recent enactment of the Patient Protection and Affordable Care Act, patients' and consumers' roles in American health care require more than ever the careful analysis and attention exemplified by this innovative volume.

✦ Table of Contents

Contents
Introduction:
Patients as Policy Actors
Part I
: Voices of the Silent
Chapter 1.
Solitary Advocates: The Severely Brain Injured and Their Surrogates
Chapter 2. Physician-Patient Communication in the Care of Vulnerable Populations: The Patient’s Voice in Interpersonal Policy
Chapter 3.
Is It Time to Push Yet?: The Challenges to Advocacy in U.S. Childbirth
Chapter 4. A Pound of Flesh: Patient Legal Action for Human Research Protections in the Biotech Age
Part II: From Individual to Collective
Chapter 5.
From Outsiders to Insiders: The Consumer-Survivor Movement and Its Impact on U.S. Mental Health Policy
Chapter 6.
“Don’t Scream Alone”: The Health Care Activism of Poor Americans in the 1970s
Chapter 7.
The Canary in Gemeinschaft: Using the Public Voice of Patients to Enhance Health System Performance
Chapter 8.
Patient Appeals as Policy Disputes: Individual and Collective Action in Managed Care
Part III: How Patients Matter
Chapter 9.
The Power of Us: A New Approach to Advocacy for Rare Cancers
Chapter 10.
Patients and the Rise of the Nurse-Practitioner Profession
Chapter 11. A House on Fire: Newborn Screening, Parents’ Advocacy, and the Discourse of Urgency
Chapter 12. Measuring Success: Scientific, Institutional, and Cultural Effects of Patient Advocacy
Epilogue: Principles for Engaging Patients
in U.S. Health Care and Policy
Notes on Contributors
Index