Patients As Policy Actors

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.

"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) "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) "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) "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) "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)

• Introduction: Patients as Policy Actors, by Nancy Tomes and Beatrix HoffmanPart I. Voices of the Silent1. Solitary Advocates: The Severely Brain Injured and Their Surrogates, by Joseph J. Fins and Jennifer Hersh2. 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 Despues3. Is It Time to Push Yet? The Challenges to Advocacy in U.S. Childbirth, by Elizabeth Mitchell Armstrong and Eugene Declercq4. A Pound of Flesh: Patient Legal Action for Human Research Protections in the Biotech Age, by Lori Andrews and Julie Burger ChronisPart 2. From Individual to Collective5. From Outsiders to Insiders: The Consumer-Survivor Movement and Its Impact on U.S. Mental Health Policy, by Nancy Tomes6. "Don't Scream Alone": The Health Care Activism of Poor Americans in the 1970s, by Beatrix Hoffman7. The Canary in the Gemeinschaft: Using the Public Voice of Patients to Enhance Health System Performance, by Mark Schlesinger8. Patient Appeals as Policy Disputes: Individual and Collective Action in Managed Care, by Marc A. RodwinPart 3. How Patients Matter9. The Power of Us: A New Approach to Advocacy for Rare Cancers, by Amy Dockser Marcus10. Patients and the Rise of the Nurse-Practitioner Profession, by Julie Fairman11. A House on Fire: Newborn Screening, Parents' Advocacy, and the Discourse of Urgency, by Rachel Grob12. Measuring Success: Scientific, Institutional, and Cultural Effects on Patient Advocacy, by Steven EpsteinEpilogue: Principles for Engaging Patients in U.S. Health Care and Policy, by Rachel Grob and Mark SchlesingerNotes on ContributorsIndex