Description
Book SynopsisPatients 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.
Trade Review"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 *
"
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 *
"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 *
Table of ContentsIntroduction: 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
