ABOUT THIS BOOK

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.

AUTHOR BIOGRAPHY

Beatrix Hoffman is an associate professor and chair of the department of history at Northern Illinois Unversity. She is author of The Wages of Sickness: The Politics of Health Insurance in Progressive America.

Nancy Tomes is a professor in the history department at Stony Brook University.
She is the author of several books,among them, The Gospel of Germs: Men, Women, and the Microbe in American Life.

Rachel Grob is scholar in residence and director of national initiatives at the Center for Patient Partnerships, University of Wisconsin-Madison and healthy advocacy faculty member at Sarah Lawrence College. She is author of Testing Baby: The Transformation of New Born Screening, Parenting, and Policymaking (Rutgers Press, forthcoming).

Mark Schlesinger is a professor of health policy and a fellow of the Institution for Social and Policy Studies at Yale University and past editor of the Journal of Health Policy, Politics and Law.

REVIEWS

"This strong volume brings together contributors of different disciplinary and experiential backgrounds, broadening our understanding of how patient voices influence American health care policy."

— Elizabeth Toon, University of Manchester

"A valuable, timely book. It is a guide to developments in the field, critical with the new federal health care law soon to become fully operational. Highly recommended."

— Choice

"This is a fascinating book that greatly enhances our understanding of the complexities surrounding the place of the patient in modern health care."

— Social History of Medicine

"Patients as Policy Actors provides food for thought on the representation of patients’ voices in a variety of health care arenas. This edited anthology is both academic and intended to foster change. It evaluates patient effectiveness, from patients’ struggles to be heard to their successful mobilization of resources for shared interests."

— Bulletin of the History of Medicine

"Despite all of the recent study of patient activism, there has been little attempt to synthesize its achievements and limitations—making the scholarship as fragmented as the activism itself. Patients as Policy Actors fills this void. It should be required reading for anyone interested in how individual patients might mobilize together to help effect meaningful health care reform in the United States."

— Barron H. Lerner, MD, PhD, When Illness Goes Public: Celebrity Patients and How We Look at Medicine

TABLE OF CONTENTS

Introduction: Patients as Policy Actors, by Nancy Tomes and Beatrix Hoffman

Part I. Voices of the Silent
1. Solitary Advocates: The Severely Brain Injured and Their Surrogates, by Joseph J. Fins and Jennifer Hersh
2. Physician-Patient Communication in the Care of Vulnerable Populations: The Patient's Voice in Interpersonal Policy, by M. Robin DiMatteo, Kelly B. Haskard-Zolnierek, Summer L. Williams, and Desiree Despues
3. Is It Time to Push Yet? The Challenges to Advocacy in U.S. Childbirth, by Elizabeth Mitchell Armstrong and Eugene Declercq
4. A Pound of Flesh: Patient Legal Action for Human Research Protections in the Biotech Age, by Lori Andrews and Julie Burger Chronis

Part 2. From Individual to Collective
5. From Outsiders to Insiders: The Consumer-Survivor Movement and Its Impact on U.S. Mental Health Policy, by Nancy Tomes
6. "Don't Scream Alone": The Health Care Activism of Poor Americans in the 1970s, by Beatrix Hoffman
7. The Canary in the Gemeinschaft: Using the Public Voice of Patients to Enhance Health System Performance, by Mark Schlesinger
8. Patient Appeals as Policy Disputes: Individual and Collective Action in Managed Care, by Marc A. Rodwin

Part 3. How Patients Matter
9. The Power of Us: A New Approach to Advocacy for Rare Cancers, by Amy Dockser Marcus
10. Patients and the Rise of the Nurse-Practitioner Profession, by Julie Fairman
11. A House on Fire: Newborn Screening, Parents' Advocacy, and the Discourse of Urgency, by Rachel Grob
12. Measuring Success: Scientific, Institutional, and Cultural Effects on Patient Advocacy, by Steven Epstein
Epilogue: Principles for Engaging Patients in U.S. Health Care and Policy, by Rachel Grob and Mark Schlesinger

Notes on Contributors
Index