Table of 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
Contributors
Nancy Tomes, Beatrix Hoffman, Joseph J. Fins, Jennifer Hersh, M. Robin DiMatteo, Kelly B. Haskard-Zolnierek, Summer L. Williams, Desiree Despues, Elizabeth Mitchell Armstrong, Eugene Declercq, Lori Andrews, Julie Burger Chronis, Mark Schlesinger, Marc A. Rodwin, Amy Dockser Marcus, Julie Fairman, Rachel Grob, Steven Epstein