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Library of Congress Cataloging-in-Publication DataNames: Nickitas, Donna M., editor. | Middaugh, Donna J., editor. | Feeg, Veronica D., editor.Title: Policy and politics for nurses and other health professionals : advocacy and action / [edited] by Donna M. Nickitas, Donna J. Middaugh, and Veronica D. Feeg.Description: Third edition. | Burlington, Massachusetts : Jones & Bartlett Learning, [2019]Identifiers: LCCN 2018028645 | ISBN 9781284140392 (paperback)Subjects: | MESH: Health Policy | Policy Making | Lobbying | Health Care Costs | United StatesClassification: LCC RA395.A3 | NLM WA 540 AA1 | DDC 362.10973--dc23LC record available at https://lccn.loc.gov/2018028645 6048 Printed in the United States of America22 21 20 19 18 10 9 8 7 6 5 4 3 2 1 VP, Product Management: David D. CellaDirector of Product Management: Amanda MartinProduct Manager: Rebecca StephensonProduct Assistant: Christina FreitasProduction Editor: Kelly SylvesterSenior Marketing Manager: Jennifer ScherzayProduct Fulfillment Manager: Wendy KilbornComposition: S4Carlisle Publishing Services Cover Design: Kristin E. ParkerText Design: Kristin E. ParkerRights & Media Specialist: John RuskMedia Development Editor: Shannon SheehanCover Image (Title Page, Part Opener, Chapter Opener): © Anthony Krikorian/Shutterstock Printing and Binding: McNaughton & GunnCover Printing: McNaughton & Gunn All rights reserved. No part of the material protected by this copyright may be reproduced or utilized in any form, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without written permission from the copyright owner.

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Production Credits Acknowledgments ix Preface xi Contributors xiii SECTION 1 Introduction 1 Chapter 1 Nursing’s History of Advocacy and Action . . . . . . . . . . . . . 3 Chapter 2 Policy and Politics Explained . . . . . . . . . . . . . . . . . . . . . . . 25 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .\ 43 SECTION 2 Population Health 6 3 Chapter 4 Population Health Care: Access, Cost, and Quality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .\ . 65 Chapter 5 Global Health: A Vision for Action . . . . . . . . . . . . . . . . . . . 87 Chapter 6 Mental and Behavioral Health . . . . . . . . . . . . . . . . . . . 10 5 SECTION 3 Affordable Care Act: From Enactment to Sustainability 13 5 Chapter 7 Affordable Care Act (ACA) Reframed and Uncertain . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . \ . 13 7 Chapter 8 Healthcare Quality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16 5 Brief Contents iii Anthony Krikorian/Shutterstock SECTION 4 Health Financing: Payers, Markets, and Models 18 5 Chapter 9 Healthcare Costs: Follow the Money . . . . . . . . . . . . . . 18 7 Chapter 10 Private Health Insurance Market . . . . . . . . . . . . . . . . . 20 7 Chapter 11 Medicare: Protector to Innovator . . . . . . . . . . . . . . . . . 23 1 Chapter 12 Medicaid and the Financing of Care for Vulnerable Populations: A Story of Misconceptions . . . . . . . . . . . . 25 5 Chapter 13 Innovation for the Delivery System of the Future: Medical Homes, Accountable Care Organizations, and Bundled Payment Initiatives . . . . . . . . . . . . . . . . . 279 SECTION 5 Health Care and Provider and Care Delivery 2 89 Chapter 14 Hospitals: Consolidation and Compression . . . . . . . . . 29 1 Chapter 15 Enhanced Primary Care Roles for Nurses and Other Professionals . . . . . . . . . . . . . . . . . . . . . . . . . 31 3 Chapter 16 Physicians: It Is Increasingly about the Team . . . . . . . 341 Chapter 17 Health Information Technology and the Intersection of Health Policy . . . . . . . . . . . . . . . . . . . . . 371 Chapter 18 Political Power of Nurses: Harnessing Our Values and Voices . . . . . . . . . . . . . . . . . . . . . . . . . . . 40 3 iv Brief Contents Contents Acknowledgments � � � � � � � � � � � � � � � � � � � � � � � � � � � � ix Preface � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � xi Contributors � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � xiii SECTION 1 Introduction 1 Chapter 1 Nursing’s History of Advocacy and Action � � � � � � � � � � � � � � � � � � 3 Nurses as Advocates � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 4 Advocacy and Public Health Nursing � � � � � � � � � � � � � � 6 History and Political Advocacy � � � � � � � � � � � � � � � � � � � � 9 Nursing Strong � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 11 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 13 Chapter 2 Policy and Politics Explained � � � � � � � � � � � � � � � � � � 25 Introduction � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 26 Policy Defined: A Framework for Government Action � � � � � � � � � � � � � � � � � � � � � � � � � � � 26 The Policy-Making Process � � � � � � � � � � � � � � � � � � � � � � � 31 What Is at Stake for Nurses and Other Health Professionals? � � � � � � � � � � � � � � � � � � � � � � � � � � 37 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists � � � � � � � � � � � � � � � � � � � 43 Introduction � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 44 Stakeholder Power � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 46 Expertise � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 48 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 51 Toolkit Case Studies � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 52 SECTION 2 Population Health 6 3 Chapter 4 Population Health Care: Access, Cost, and Quality � � � � � 65 Lessons from Nursing History on Vulnerability, Disparities, and Political Advocacy � � � � � � � � � � � � � 66 The Face of Vulnerability Today � � � � � � � � � � � � � � � � � � � 69 Vulnerability and Disparities from a Population-Based Perspective � � � � � � � � � � � � � � � � � 73 Political Advocacy toward Health Equity � � � � � � � � � 77 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 81 Chapter 5 Global Health: A Vision for Action � � � � � � � � � � � � � � � � � � 87 The Politics of Global Health in the United States of America � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 89 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 98 Chapter 6 Mental and Behavioral Health � � � � � � � � � � � � � � � � � � � � 10 5 Introduction to Mental and Behavioral Health � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 106 Federal Government and Presidential Efforts to Improve the Nation’s Mental Health � � � � � � � 107 State-Related Mental Health Policies � � � � � � � � � � � � 109 City and Community-Directed Mental Health Care Efforts � � � � � � � � � � � � � � � � � � � � � � � � � � � 110 Policies Encouraging Consumer-Directed Mental Health and Behavioral Health Services ( The Recovery Movement) � � � � � � � � � � 111 Challenges in the Provision of Mental Health and Behavioral Health Services � � � � � � � � � � � � � � � 112 Groups Requiring Additional Political Protection � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 112 v Anthony Krikorian/Shutterstock Lower Socioeconomic Status–Related Mental Health Policies � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 113 Veterans’ Use of Mental Health Services and Policy Issues � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 114 Policy Innovations to Improve Mental Healthcare Outcomes � � � � � � � � � � � � � � � � � � � � � � � � 115 Ongoing Challenges: A Look to the Future of Policy Making in Mental Health and Behavioral Health � � � � � � � � � � � � � � � � � � � � � � � � � � � � 116 Summary � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 118 SECTION 3 Affordable Care Act:

From Enactment to Sustainability 13 5 Chapter 7 Affordable Care Act (ACA) Reframed and Uncertain � � � � 13 7 Health Reform in the United States: Recent and Past History � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 138 Overview of the Patient Protection and Affordable Care Act � � � � � � � � � � � � � � � � � � � � � � � � � � 145 Financing Health Reform � � � � � � � � � � � � � � � � � � � � � � � 149 Quality Improvement and Prevention Initiatives � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 150 Constitutionality � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 150 States and Health Reform � � � � � � � � � � � � � � � � � � � � � � � 152 Key Issues Going Forward � � � � � � � � � � � � � � � � � � � � � � � 153 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 157 Chapter 8 Healthcare Quality � � � � � � � � � 16 5 Quality Care and Public Policy � � � � � � � � � � � � � � � � � � 166 Human Error � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 167 Patient-Centered Care � � � � � � � � � � � � � � � � � � � � � � � � � � 171 Error Measurement Tools � � � � � � � � � � � � � � � � � � � � � � � 172 Agency for Healthcare Research and Quality � � � � 172 Patient Safety Indicators � � � � � � � � � � � � � � � � � � � � � � � � 173 National Database of Nursing Quality Indicators � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 173 National Error-Reduction Efforts � � � � � � � � � � � � � � � � � 174 Public Quality Reporting Systems � � � � � � � � � � � � � � � 176 Centers for Medicare & Medicaid Services � � � � � � � 177 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 178 SECTION 4 Health Financing: Payers, Markets, and Models 185 Chapter 9 Healthcare Costs: Follow the Money � � � � � � � � � � � � � � � � 18 7 Health Care Is Different � � � � � � � � � � � � � � � � � � � � � � � � � 188 Resource Allocation and Market Role � � � � � � � � � � � 189 Cost —The Main Problem � � � � � � � � � � � � � � � � � � � � � � � 193 Health Policy—ACA and Beyond � � � � � � � � � � � � � � � � 198 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 200 Chapter 10 Private Health Insurance Market � � � � � � � � � � � � � � � � � � 20 7 History of U �S� Health Insurance Reform � � � � � � � � � 208 Health Insurance Plans � � � � � � � � � � � � � � � � � � � � � � � � � � 209 Employer-Sponsored Health Insurance � � � � � � � � � � 214 Health Insurance Exchange Marketplace � � � � � � � � 215 Laws and Regulations Impacting the Provision of Health Insurance � � � � � � � � � � � � � � � � � 215 The Health Reform Changes Impacting Private Insurers � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 216 ACA and Its Impact on Employers � � � � � � � � � � � � � � � 216 Private Insurance Industry Response to ACA � � � � 218 Health Insurance Legislative Changes on the Horizon � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 219 Opportunities for Nursing � � � � � � � � � � � � � � � � � � � � � � � 219 Quality Patient Care and Care Coordination Strategies � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 220 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 222 Chapter 11 Medicare: Protector to Innovator � � � � � � � � � � � � � � 23 1 Introduction � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 232 Evolution of the Passage of Medicare: Timeline and Milestones � � � � � � � � � � � � � � � � � � � � � 233 Current Medicare Structure � � � � � � � � � � � � � � � � � � � � � 236 Overview of Medicare Spending � � � � � � � � � � � � � � � � 241 How We Pay for Medicare � � � � � � � � � � � � � � � � � � � � � � � 241 Medicare Quality Improvement Organizations � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 242 vi Contents The Future Outlook: The Way Forward � � � � � � � � � � � 243 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 247 Chapter 12 Medicaid and the Financing of Care for Vulnerable Populations: A Story of Misconceptions � � � � � � � � � � � 25 5 Introduction � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 256 Health Outcomes in the United States in Relation to 10 Developed Nations � � � � � � � � � � � � 257 Populations Served by Original Medicaid � � � � � � � 259 Original Medicaid Is Different Program in 50 States and Washington, DC � � � � � � � � � � � � � � � � 260 Traditional Medicaid Costs and Variation by State � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 261 ACA Medicaid � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 265 Who Is Left Out � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 266 Health Insurance and the Health of Vulnerable People � � � � � � � � � � � � � � � � � � � � � � � � � � � � 267 Chapter 13 Innovation for the Delivery System of the Future: Medical Homes, Accountable Care Organizations, and Bundled Payment Initiatives � � � � � � � 279 Introduction � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 280 The Innovation Center: Promoting Care Delivery Models for the Future � � � � � � � � � � � � � � � 280 Rationale for New Models � � � � � � � � � � � � � � � � � � � � � � � 281 The Four Major Healthcare Service Delivery Models � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 281 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 286 SECTION 5 Health Care and Provider and Care Delivery 2 89 Chapter 14 Hospitals: Consolidation and Compression � � � � � � � � � � 29 1 Hospitals’ Role within the Delivery System � � � � � � 292 Hospitals in a Historic Context � � � � � � � � � � � � � � � � � � 292 Baseline Information � � � � � � � � � � � � � � � � � � � � � � � � � � � � 294 Challenges Facing the Community Hospitals � � � � 298 Hospital Strategies in a Competitive Market � � � � � 301 The ACA and The Rationalization of Hospital Care � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 303 Healthcare Policy, Health Reform, and the Role of Hospitals � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 306 Chapter 15 Enhanced Primary Care Roles for Nurses and Other Professionals � � � � � � � � � � � � � 31 3 Why Primary Care? The Case for Change � � � � � � � � 315 Overtreatment, Overuse, Waste, and Healthcare Harm � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 315 Support for Value-Based Care as a Bipartisan Approach � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 317 How Payment Reform Shapes Needs and Opportunities in Primary Care � � � � � � � � � � � � � � � � 318 What Skills Do Nurses Need in These Advanced Primary Care Settings? � � � � � � � � � � � � � 324 Nursing Education � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 329 Mental Health � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 331 Dental Care � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 331 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 332 Chapter 16 Physicians: It Is Increasingly about the Team � � � � � � � � � � � 341 Medical Professionalism � � � � � � � � � � � � � � � � � � � � � � � � 342 Physician Supply: Who Are the Doctors? � � � � � � � � 343 How Are Physicians Practices Organized and Reimbursed? � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 348 Physician Accountability � � � � � � � � � � � � � � � � � � � � � � � � 353 Medical Errors, Physician Practice, and the Barriers to Quality Care � � � � � � � � � � � � � � � 356 Overcoming the Barriers to Quality Care � � � � � � � � 356 Conclusion: Choices and Interests � � � � � � � � � � � � � � � 358 Chapter 17 Health Information Technology and the Intersection of Health Policy � � � � � � � � � � � � � � � � � � � 371 Introduction � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 372 Federal Origin and Influence in Development of HIT � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 373 Contents vii Nursing and Health Information Technology � � � � 378 Nursing Terminology and the Data of Nursing Care � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 380 A National Action Plan: The Macro Perspective on HIT � � � � � � � � � � � � � � � � � � � � � � � � � � � 381 Nursing and the Electronic Health Record: The Micro Perspective on HIT � � � � � � � � � � � � � � � � � 382 Health IT: The Intersection of Data Security and Health Policy � � � � � � � � � � � � � � � � � � � � � � � � � � � � 383 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 391 Chapter 18 Political Power of Nurses:

Harnessing Our Values and Voices � � � � � � � � � � � � � � � � � � � 40 3 Origins of the Nursing Profession � � � � � � � � � � � � � � � 405 Nursing Definitions: Past and Present � � � � � � � � � � � 406 Nurses and Policy � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 407 The Nursing Workforce � � � � � � � � � � � � � � � � � � � � � � � � � 413 Transforming the Care Delivery System � � � � � � � � � 415 Pathways to Nursing as a Career Choice � � � � � � � � � 416 Specialization and the Evolution of Nursing Roles � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 419 Current State of the Profession � � � � � � � � � � � � � � � � � � 419 Enhanced Nurse Licensure Compact � � � � � � � � � � � � 421 21st-Century Nursing: Evolving Roles for Nurses � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 421 Policy as a Tool to Influence Nursing Professionalism and Nursing � � � � � � � � � � � � � � � � � 425 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 427 Legislative Resources � � � � � � � � � � � � � � � � � � � � � � � � � � � 427 Federal Agency Sites � � � � � � � � � � � � � � � � � � � � � � � � � � � � 428 Other Related Sites � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 429 Index ��������������������������������������� 449 viii Contents Acknowledgments It is with sincere appreciation and gratitude that we would like to acknowledge the many individ - uals, including family, friends, professional col - leagues, and students, who have made this third edition possible. Special thanks go to those pro - fessional nurses who have gone before us pav - ing the way by being stewards of the discipline, advocates, and activists in promoting nursing, public health, and policy. As the editors, we are profoundly grateful to continue in their foot - steps, fulfilling our promise to safeguard the health of society and ensuring that future gen - erations of nurses recognize how health and public policy are instrumental to their educa - tion and practice. To my co-editors, Donna J. Middaugh and Veronica D. Feeg , your enduring friendship, men - torship, and insight have made this book possi - ble. With your profound trust and unwavering commitment, this third edition is offered in the ongoing quest to ensure all nurses harness the power within and bring their voices and values to the bedside, boardroom, classroom, and halls of Congress to promote policies that educate and inform the public about what nursing is, not just what nurses do. We also would like to acknowledge the superior oversight and dedication of Tricia Plummer, our team administrator, who help coordinate all the essential activities that made this third edition such a seamless success. Tri - cia, your professional skills and support were greatly appreciated. To my husband, Michael, whose love, pres - ence, and encouragement has allowed me to fulfill my professional hopes and dreams. Thank you for making this such an exciting journey and always believing all things are possible. To my children, Nick, Lili, Kate, Luke, and JP, your joy and love have fueled my energy and enthusiasm to live my life by the words of Mahatma Gandhi:

“Keep your values positive because your values become your destiny.” Always be positive and be an example so that others may follow. — Donna M. Nickitas To my husband Robert and our son Rob - ert Guy, who have awakened my soul and are my inspiration in everything I do. They have taught me to love unconditionally, enjoy life, live with purpose, take risks, and strive for ex - cellence. Robert Guy: You have become such a compassionate, dedicated nurse! We are so proud of you! Also, to the memory of my mother, Alpha Duff, a teacher, who taught me to never stop learning. — Donna J. Middaugh To my husband Alan, you are my rock and my enabler. You have always given me space to do what makes me happy and wings to make me soar into new endeavors without fear of failing.

You make the days easy for me to be produc - tive in my own way. You give me understanding when I’m unraveled; you give me comfort when I need it most; you give me love in all you do. To my daughter, Kelly, you are my sun and the light of my life. You have become my teacher and my sage with your wise guidance and words ix Anthony Krikorian/Shutterstock of wisdom. You provide me with creative in - spiration in my work by modeling it in yours. To my mother, Mary, and in memory of my dad, Americo “Red” DeCarolis, you both nur - tured my passion for learning and supported me unconditionally and financially throughout my years in college. You may not have finished high school but you always valued the impor - tance of education. — Veronica D. Feeg x Acknowledgments Preface Sally S. Cohen Why this book? Why now? Nurses and other health professionals have many textbooks on health policy to choose from. Donna M. Nickitas , Donna J. Middaugh , and Veronica D. Feeg’s third edition of Policy and Politics for Nurses and Other Health Professionals has distinct features that make it a wise investment for faculty, students, and others seeking concise, expert, and useful information on how to understand and influ - ence health policy. First, the editors have carefully chosen the most salient issues on government agendas and not overwhelmed readers with the plethora of all possible health policy issues around us. This is critical in order to make health policy mean - ingful to and within reach of students and cli - nicians who can be quickly overwhelmed by the world of health policy. Second, this edition’s addition of case stud - ies is of tremendous benefit. Based on decades of teaching health policy at all levels of nurs - ing education and to interdisciplinary and in - terprofessional groups of students and faculty, I am convinced that policy case studies are es - sential. They offer faculty options for innovative assignments and discussions that encourage stu - dents to write or speak about health policy in a nonjudgmental context. The case studies, which are strategically placed within the chapters, of - fer real-life scenarios. These scenarios typically have more than one possible solution to a policy problem. Case studies also: (a) facilitate discus - sions about policy problems, (b) teach students to articulate significant themes in health policy, (c) require synthesis of valid evidence, and (d) demonstrate the importance of political analy - ses. The editors have wisely included more than one case study in some chapters to demonstrate how one policy can be applied to many differ - ent situations or issues. The third advantage of this text is that the editors have a well-honed vision of what health professionals need to know in an era of con - tinually shifting public policy sands. Nickitas, Middaugh, and Feeg’s third edition is based on the premise that health professionals need to be as nimble in government arenas as they are in clinical settings. Moreover, they recognize that this entails linking local, national, and global health issues because of their inherent inter - connectedness. With media and technology enabling rapid dissemination of information, the editors have provided content and case studies that encourage effective communication using online resources. Some of these issues primarily apply to individuals and populations with access to the In- ternet and other technologies. Nurses and other healthcare providers recognize that vast parts of the world lack such resources. People in such locales are struggling to find clean water, erad - icate severe hunger, and prevent common and new infectious diseases. Moreover, the geopolit - ical terrain has become increasingly complex as war, terrorism, and natural disasters strike across the globe. The realities of climate change and en - vironmental health risks make the sweeping dif - ferences in allocation of resources between the “haves” and “have nots” an ever-present challenge for health professionals. These global challenges are in contrast to other public health issues, in - cluding the proliferation of noncommunicable xi Anthony Krikorian/Shutterstock conditions such as obesity, cardiac illness, and mental health and behavioral problems (espe - cially substance abuse and addictions). Nickitas, Middaugh, and Feeg wisely ad - dress the diversity of these issues by including chapters on global and population health as in - tegral to the text—and not as “add-ons” at the end. By addressing poverty and other socioeco - nomic causes of health problems, they acknow - ledge the importance of health policy beyond the doors of the clinic or hospital. Similarly, they frame the chapter on physi - cians as an issue of interprofessional teamwork, instead of trying to present physicians or any other professional as separate components of the healthcare delivery system. By emphasizing the importance of team care, they have minimized the risk of readers engaging in the familiar and useless “physician–nurse” games. Will this text endure forever? No health policy text can meet that challenge. However, given the complexity of health policy and the significant problems of teaching it to nurses and health professionals, this third edition of Policy and Politics for Nurses and Other Health Profes - sionals can facilitate teaching and learning across diverse settings and student populations. In the health policy and education arenas, which can be characterized by considerable disagreement and little consensus as players vie for scarce re - sources, this text is a winner and one that can bring players together as they find common ground in addressing the global and local issues on which people’s lives and well-being depend. xii Preface Contributors Nancy Aries, PhD Professor of Social Policy School of Public Affairs Director of Baruch Honors Programs Baruch College The City University of New York New York, New York Steven Baumann, PhD, APRN-BC, RN Professor Hunter College Hunter-Bellevue School of Nursing New York, New York Claudia J� Beverley, PhD, RN, FAAN Professor (Secondary), Department of Health Policy and Management Professor College of Nursing Professor (Secondary) College of Medicine Director, Arkansas Aging Initiative, Donald W. Reynolds Institute on Aging University of Arkansas for Medical Sciences Little Rock, Arkansas Linda Bradley , MSN, MPH, PHCNS-BC Assistant Professor New York City College of Technology Brooklyn, New York Pennie Sessler Branden , PhD, CNM, RN, CNE Barbara Caress Senior Consultant Service Employees International Union New York, New York Ellen Chesler Senior Fellow Roosevelt Institute New York, New York Barbara Cohen, PhD, RN Professor of Health Services School of Health Studies Berkeley College New York, New York Wesley Cook , DNP(c), APRN, FNP-BC, CPSN Nurse Practitioner Washington, DC Brigitte Cypress, EdD, RN, CCRN Associate Professor East Stroudsburg University Department of Nursing East Stroudsburg, Pennsylvania Patricia Eckardt , PhD, RN Molloy College Rockville Centre, New York Veronica D � Feeg , PhD, RN, FAAN Associate Dean and Director PhD Program in Nursing Molloy College The Barbara H. Hagan School of Nursing Rockville Centre, New York Stephanie Ferguson, PhD, RN, FAAN, FNAP Consulting Associate Professor Stanford University Stanford, California Founder, President, and Chief Executive Officer Stephanie L. Ferguson Associates, LLC Amherst, Virginia xiii Anthony Krikorian/Shutterstock Shirley Girouard , PhD, RN, FAAN Professor and Associate Dean College of Nursing SUNY Downstate Medical Center Brooklyn, New York Valerie Gruhn Doctors Without Borders/Médecins Sans Frontières Joyce Hahn, PhD, RN, APRN-CNS, NEA-BC, FNAP Associate Professor School of Nursing George Washington University Washington, DC Christine Hancock Director C3 Collaborating for Health London, United Kingdom Lauran Hardin , MSN, RN-BC, CNL Senior Director Cross-Continuum Transformation National Center for Complex Health and Social Needs Camden Coalition of Healthcare Providers Camden, New Jersey Olga S� Kagan , PhD, RN Eileen Levy, RN, PhP Nurse Practitioner at NSLIJ Huntington Hospital Huntington, New York Sandra B� Lewenson, EdD, RN, FAAN Professor College of Health Professions Lienhard School of Nursing Pace University Pleasantville, New York Jennifer E � Mannino Donna Middaugh, PhD, RN Clinical Associate Professor Associate Dean for Academic Programs Coordinator, Nursing Administration Masters Specialty College of Nursing University of Arkansas for Medical Sciences Little Rock, Arkansas Geraldine Moore , EdD, RN Molloy College Rockville Centre, New York Lois Moylan , PhD, RN Molloy College Rockville Centre, New York Donna M� Nickitas, PhD, RN, NEA-BC, CNE, FAAP, FAAN Dean and Professor Rutgers University School of Nursing Camden , New Jersey Editor, Nursing Economic$, The Journal for Health Care Leaders Pitman, New Jersey Betty Rambur, PhD, RN, FAAN Routhier Endowed Chair for Practice Professor of Nursing University of Rhode Island Kingston, Rhode Island Roby Roberston, PhD Professor Emeritus School of Public Affairs University of Arkansas – Little Rock Little Rock, Arkansas Yael Rosenstock Director of Programming Center for Ethnic, Racial , and Religious Understanding CUNY New York, New York Nancy Rudner, APRN Professor of Nursing George Washington University Washington, DC xiv Contributors Janice A� Selekman , DNSc, RN, NCSN, FNASN Professor School of Nursing University of Delaware Newark, Delaware Brenda Helen Sheingold, PhD, MBA, BSN, FNAP Assistant Professor Director Health Care Quality Graduate Programs George Washington University Washington, DC Lisa Sundean , PhD, RN Assistant Professor Department of Nursing University of Massachusetts , Boston Boston, Massachusetts Joel Teitelbaum, LLM Associate Professor Department of Health Policy and Management Milken Institute School of Public Health George Washington University Washington, DC Anh Phuong Tran , BSN, RN-BC, ONC Adult Health Nurse Practitioner New York, New York Marie Truglio-Londrigan, PhD, RN Professor College of Health Professions Lienhard School of Nursing Pace University Pleasantville, New York Ralph Vogel, PhD, RN Clinical Assistant Professor College of Nursing University of Arkansas for Medical Sciences Little Rock, Arkansas Helen Werner, PhD, RN Assistant Professor Program Coordinator, Upper Division Monroe College School of Nursing Monroe, New York Sara Wilensky, PhD Faculty Milken Institute School of Public Health George Washington University Washington, DC Contributors xv 1 © Anthony Krikorian/Shutterstock SECTION 1 Introduction CHAPTER 1 Nursing’s History of Advocacy and Action CHAPTER 2 Policy and Politics Explained CHAPTER 3 A Policy Toolkit for Healthcare Providers and Activists © Anthony Krikorian/Shutterstock Nursing’s History of Advocacy and Action Sandra B. Lewenson and Donna M. Nickitas OVERVIEW The American Nurses Association (ANA) reminds nurses of the social contract between nurses and the public that “reflects the profession’s long-standing core values and ethics, which provide grounding for health care in society” (American Nurses Association [ANA], 2010, p. 10). The ANA Social Policy Statement has articulated nursing’s social obligation since it was first published in 1980. Nurses turn to this document to understand how nursing fulfills this obligation by providing ethical and culturally competent care to individuals, families, communities, and populations. It also helps nurses explain their role in the larger society, to new members of the profession, and to nurses already working in the field. New position statements about inclusivity and diversity by the American Association of Colleges of Nursing (AACN) (2017) and the American Academy of Nursing (AAN) (2016) contribute to a sense of responsibility nurses share to fulfill the social obligation to society. The AACN (2017) states that “to have equitable systems, all people should be treated fairly, unhampered by artificial barriers, stereotypes or prejudices” (p. 173). It continues to address unconscious and conscious bias of which we as nurses must be aware to make a change. Advocacy includes, and if not, should include, the notion of inclusivity and diversity. This chapter explores political advocacy in light of nursing’s role and responsibility to advocate for and act on behalf of those for whom nurses have contracted to provide care. The first section of the chapter explains why nurses need to know history to be effective advocates and why knowing history matters to advocacy. It provides historical exemplars to highlight how history informs the profession as it continues to invoke the social contract that nursing maintains with society. The second part of the chapter examines a more contemporary look at nursing’s political advocacy efforts and what it means for nurses, the profession, and the health of the public at large. 3 CHAPTER 1 OBJECTIVES ■ Discuss why nursing history is relevant to health policy and nursing advocacy and action. ■ Explore historical exemplars that provide evidence of nursing’s ability to advocate for individuals, families, communities, and populations. ■ Analyze nursing’s role in how political advocacy impacts nurses, the profession, and the health of the public at large. ▸ Nurses as Advocates Although society reportedly trusts nurses to work toward accomplishing the goals set forth for them by the profession (ANA, 2010), nurses may not be grounded in how they reached these “long-standing core values” that the nursing pro - fession developed over time. As nurses advocate for their patients—whether seen as individu - als, families, communities, or populations— an understanding of nursing’s enduring and long-standing values that are rooted in its his - tory provide depth and breadth to their efforts.

To this end, it is important to know nursing’s historical role in ensuring access to care; it is important to know nursing’s contributions to - ward patient quality and safety measures; it is important to know how nursing interventions changed over time in response to the context in which nurses practiced; and it is important to know how nurses and the profession adapted to shifts in the social, political, economic, and cultural environment (D’Antonio & Lewenson, 2011). Fairman (2017) writes that “our past shapes everything we do, whether we explicitly acknowledge it or not” (p. xi).

Why Study Nursing History?

Historian and nurse educator Ellen Baer and col - leagues respond to the question of why nursing history should be studied: Just as a nurse can make little progress caring for or curing a patient’s presenting problem without knowing the patient’s physiological, psychological, and cultural history so is it for a nurse trying to make sense out of the persistent problems and possibilities in nursing and health care.

To make right decisions in planning nursing’s future in the context of our complex health-care system, nurses must know the history of the actions being considered, the identities and points of view of the major players, and all the states that are at risk. These are the lessons of history. (Baer, D’Antonio, Rinker, & Lynaugh, 2001, p. 7) Some lessons from the past that support the understanding of political advocacy and action can be learned by examining how Flor - ence Nightingale influenced the development of nursing education programs that started in 1873, and led to what became known as the Modern Nursing Movement. It began with the first three United States Nightingale training schools: the Bellevue Training School for Nurses in New York City; the Boston Training School for Nurses at Massachusetts General in Boston; and the Con - necticut Training School in New Haven, Con - necticut. Following the opening of these three schools, hospitals around the country recog - nized the value that student nurses bring to the hospital because care could be provided at rela - tively low cost and the hospital would have no obligation to hire the nurses when they gradu - ated. Nurses, after their training was complete, would need to find work elsewhere, typically in private duty or in the emerging field of pub - lic health nursing. Twenty years after the opening of these schools of nursing, early nursing leaders 4 Chapter 1 Nursing’s History of Advocacy and Action recognized the need to organize nurses to con - trol the quality of practice and training as a way to protect the public. Between 1893 and 1912, four professional nursing organizations formed to do just that: the National League for Nurses, formed in 1893 (originally called the American Society of Superintendents of Training Schools for Nurses); the American Nurses Association, started in 1896 (originally named the Nurses’ Associated Alumnae of the United States and Canada); the National Association of Colored Graduate Nurses, which formed to address ra - cial bias in nursing and health care and was in existence between 1908 and 1952; and finally, in 1912, the National Organization of Public Health Nursing, formed to control practice and educa - tional standards during the rising movement of public health and public health nursing in the United States. This organization ended in 1952 when the National League for Nursing assumed its role (Lewenson, 1993). Even before women in the United States gained the vote in 1920, nurses sought legis - lation that would define nursing practice, and they advocated for the protection of the pub - lic by prohibiting anyone who was not profes - sionally trained from calling him- or herself a nurse. This required convincing lawmakers, at that time only men, to support nursing legisla - tion; the nurses knew they could not vote into law the early nurse practice acts. While nurses struggled for statewide nursing registration, they had to “fight battles against long hours of work and opposition to nursing education” ( Lewenson, 1993, p. 171). To accomplish their goals, some nurses, either individually or through the early nursing organizations, began to support the work of the suffragist movement and aligned themselves with the larger women’s movement of the early 1900s. Individual nursing leaders, like public health pioneer Lillian Wald and nursing suffragist Lavinia Dock, advocated for health - care reforms in the community and the legisla - tive arena. The professional organizations that formed during this period did so to protect the public from uneducated nurses and to develop standards for nursing education and practice. Although an in-depth history of this period is beyond the scope of this chapter, it is im - portant for nurses to understand that political advocacy was part of the profession’s early iden - tity. Political advocacy and action in nursing are not new or innovative. Nurses have always been political advocates for those in their care (Lewenson, 2012). As a result, the early efforts made by nurses and their professional orga - nizations provide a narrative for and insight into today’s advocacy efforts, where protection of the public means ensuring a level of educa - tion for all nurses, the development of quality and safety standards, and the ability of nurses to practice to the fullest extent of their educa - tion, as recommended by an Institute of Med - icine report (2010).

History Counts Fairman and D’Antonio (2013) wrote, “history counts in health policy debates” (p. 346). Bring - ing a historical perspective to discussions about health care deepens our understanding of the is - sues by recognizing the evolution of ideas across time. In the debate about control of the “newly” minted medical homes of today, understanding the roles of early public health nurses in provid - ing primary healthcare services to individuals, families, communities, and populations in both urban and rural settings can trigger some use - ful ideas or solutions about what to call the new entity, who should finance it, and who should lead it (Keeling & Lewenson, 2013). The current debate centered on medical homes provides such an example. The term was first coined in the 1960s and defined a medical model of care for chronically ill pediatric pa - tients that looked at control issues, inter- and intradisciplinary issues of providing care, and the financial aspects of care. Physicians led the earlier medical home movement that has evolved to mean “a model of primary care that is accessi - ble, continuous, comprehensive, family-centered, coordinated, compassionate and culturally ef - fective” (American Academy of Pediatrics, 2002, as cited in Keeling & Lewenson, 2013, p. 360). Nurses as Advocates 5 and found support for the venture from philan - thropists and other nursing leaders. Wald’s work expanded from just nine public health nurses working in one settlement house that was estab - lished in 1893 to more than 250 nurses working throughout the New York City area in at least seven different locations (Buhler- Wilkerson, 2001; Keeling, 2007; Lewenson, 1993). The Henry Street Settlement was one of the few pub - lic health organizations to hire black nurses to care for black patients (Pitt-Mosley, 1996). This policy of inclusion did not exist in most health - care settings, and discrimination was typically the order of the day, whether in the north or south or whether conscious or unconscious. While caring for the families, Wald saw a close relationship between the health of the pub - lic and civil responsibility. In a speech she deliv - ered in 1900 at the sixth annual meeting of the American Society of Superintendents of Train - ing Schools for Nurses, Wald said that “among the many opportunities for civic and altruistic work pressing on all sides nurses having superior advantages in their practical training should not rest content with being only nurses, but should use their talents wherever possible in reform and civic movements” (Wald, 1900, as cited in Birnbach & Lewenson, 1991, p. 318). In keep - ing with her beliefs, Wald and her colleagues at Henry Street introduced several legislative ini - tiatives that would improve the health of chil - dren, such as the introduction of nurses in public schools (Wald, 1915). Wald (1915) described how she advocated for hiring nurses in the local pub - lic schools to decrease truancy rates, given that children were sent home due to illness and lack of treatment. As of 1897, physicians had only recently been hired by the New York City De - partment of Health to assess children in school.

Doctors sent children home from school when any contagious illnesses were found. However, this did not address some of the pressing health issues because the physicians did not provide treatment for conditions such as trachoma, a contagious eye infection that plagued school- age children at the time. Wald (1915) wrote about her experience convincing legislators of Nurses use the words that define the medical home of today to describe nursing’s work of providing accessible, continuous, comprehen - sive, family-centered, coordinated, compassion - ate, and culturally effective care. Knowing the history of nursing serves to highlight the pro - fession’s strong contribution to health care in the United States.

▸ Advocacy and Public Health Nursing Exploring some of the public health initiatives that Wald established—the Henry Street Set - tlement and the American Red Cross Town & Country—offers excellent examples of how nurs - ing, history, and political advocacy and action intersect. By studying the work of those nurses and nursing leaders within these settings, we not only learn about the role nurses played in primary health care (as described by Keeling & Lewenson, 2013), but we can also learn about the healthcare advocacy that public health nurses sought for those individuals, families, and com - munities. We also learn about the unconscious and conscious bias shared by society, includ - ing nurses, towards black nurses and the sub - sequent outcome that race played in healthcare outcomes. The next section uses these two early 20th-century public health initiatives as exam - ples of political advocacy by public health nurses.

Advocacy at Henry Street Lillian Wald graduated from nurses’ training in 1891 from the 2-year diploma-based program at New York Hospital in New York City. Within 2 years of graduating, she and her school friend Mary Brewster recognized the overwhelming healthcare needs of immigrant families living in the overcrowded and unclean conditions of the tenement houses on the Lower East Side of New York City. Filled with a sense of social ob - ligation to improve the health of society, Wald and Brewster began the Henry Street Settlement 6 Chapter 1 Nursing’s History of Advocacy and Action Within 1 month, the experiment was deemed successful, and an “enlightened Board of Esti - mate and Apportionment voted $30,000 for the employment of trained nurses, the first mu - nicipalized school nurses in the world” (Wald, 1915, p. 53). School nursing continues to be a concern for those interested in political advo - cacy to improve the health of our young and vulnerable populations. Historian Mary Gibson (2017) writes that: Today’s philosophy still reflects the pro - tective and hopeful beliefs of leaders in education of 100 years ago concerning the influence of child health on our nation’s future.  .  . therefore, keeping children in school, healthy and ready to learn, is a universal goal throughout the United States. (p. 37) Advocacy in the Town & Country Wald’s advocacy extended to families living in rural settings. One of the most compelling ex - amples is the establishment of the American Red Cross Rural Nursing Service (later known as the Town & Country). As Keeling and Lewen - son wrote (2013), this organization “served as the point of contact for families in rural com - munities where remoteness, isolation, and fewer physicians and nurses created barriers to care” (p. 362). Wald believed that the American Red Cross—already organized to provide nursing ser - vices during wartime and natural or manmade disasters—was the right vehicle in which to or - ganize public health nursing services throughout the country during peacetime (Dock, Pickett, Clement, Fox, & Van Meter, 1922; Keeling & Lewenson, 2013). Through Wald’s influence, philanthropists supported the implementation of this new rural public health nursing service.

During the first year, criteria were established for nurses who would collaborate with community leaders, physicians, and families to provide both curative and preventive health care in rural set - tings. The requirements to become a rural pub - lic health nurse were far reaching and included the value of assigning public health nurses in the schools in her book The House on Henry Street . In 1902, when a reform administration came into power, the medical staff was reduced, the physicians’ salary was increased to $100 per month, and they were expected to work only 3 hours per day. The health commissioner or - dered an examination of all public school pu - pils and was horrified to learn of the prevalence of trachoma. Thousands of children were sent away from school because of this infection.

Where medical inspections were the most thor - ough, the classrooms were empty. It was ironic that Wald watched the children who had been turned away from school playing with the chil - dren they had been sent home to protect. Few children received treatment, and it followed that truancy was encouraged: The time had come when it seemed right to urge the addition of the nurse’s service to that of the doctor. My colleagues and I offered to show that with her assistance few children would lose their valuable school time and that it would be possible to bring under treatment those who needed it.  .  .  . I exacted a promise from several of the city officials that if the experiment were successful, they would use their influence to have the nurse, like the doctor, paid from public funds. Four schools from which there had been the greatest number of exclusions for medical causes were selected, and an experienced nurse, who possessed tact and initiative, was chosen from the settlement staff to make the demonstration. . . . Many of the children needed only disinfectant treatment of the eyes, collodion ap - plied to ringworm, or instruction as to cleanliness, and such were returned at once to the class with a minimum loss of precious school time. Where more serious conditions existed the nurse called at the home. (Wald, 1915, pp. 51–52) Advocacy and Public Health Nursing 7 and urban public health settings. These courses were valuable for nurses who practiced in rural settings because they did not have the same sup - port systems as urban areas. Black nurses faced barriers to attending some of these early public health courses and, as a result, contributed to few entering this ser - vice. Frances Elliot Davis, a graduate of the Freed - man’s School of Nursing in Washington, DC, did attend the 4-month program at Teachers College and was admitted as a Town & Country nurse in 1917. She was considered the first black nurse to be admitted into the American Red Cross (Hine, 1989; Lewenson, 1993). Influenced by the return - ing soldiers and the influenza pandemic in 1918, Davis, along with other black nurses, were finally accepted into the American Red Cross reserves at the end of World War I. The bias of the mili - tary and, subsequently, the American Red Cross, reared itself in several ways. One of the most bla - tant ways was the designation of race on each of these nurses’ badges, separating them from their white colleagues. Frances Elliot Davis received her badge with the number 1-A inscribed on the back. This was one way the Red Cross that served as the gatekeeper into the Army Nurses Corps could maintain the practice of segregated living quarters and segregated health care. The National Association of Colored Graduate nurses advo - cated changes in these practices that eventually ended by mid-20th century (Lewenson, 2017). Wald’s advocacy extended to the use of me - dia to show the public what a rural public health nurse could do and to garner support for the initiative. While she was at the third meeting of the American Red Cross Committee on Ru - ral Nursing—the committee established by the American Red Cross in 1912 to develop the cri - teria for the Town & Country—Wald suggested that the committee “get in touch with the Publi - cation Syndicate, and Rural Nursing written up possible [ sic] in story form for the Ladies’ Home Journal and other popular magazines” (American Red Cross Town & Country Nursing Service, 1913, p. 2). At the same meeting, it was noted that Wald and others supported establishing a relationship with the Metropolitan Life Insurance Company pragmatic skills. Nurses were expected to ride a bicycle or a horse, or drive a car so that they could access their patients.

© fotorobs/Shutterstock More important, and often difficult to find, were nurses who had an education that prepared them to negotiate and collaborate with others in the community. Typical nurses’ training programs did not provide these skills. It was determined that a minimum of a 4-month education was needed to prepare nurses to work independently in com - munities across America (American Red Cross Rural Nursing Service, 1912–1914). Educational programs were established, like the one at Teach - ers College in New York, in conjunction with the Henry Street Settlement and the rural District Nursing Service of Northern Westchester, soon after the American Red Cross Rural Nursing Ser - vice formed. By 1914, the new public health nurse curriculum offered courses in sociology, munici - pal and rural sanitation, and experiences in rural 8 Chapter 1 Nursing’s History of Advocacy and Action the debate, and to offer a “way to think about the future” (Fairman & D’Antonio, 2013, p. 346). The work of the nurses at the Henry Street Settlement and the American Red Cross Town & Country gives two examples that can stimulate discussions about healthcare reform today. Readers are en - couraged to explore the many historical studies being completed and the early writings of nurses that can be found in nursing journals, such as the American Journal of Nursing . This journal has digitalized its entire collection from 1900 to the present, allowing readers to access arti - cles online and explore nursing advocacy over time. The American Association for the History of Nursing (AAHN) (www.aahn.org) also pro - vides information and resources for where one can go to find nursing archives, learn more about historical methods, and attend the association’s annual meeting where the latest in historical re - search is presented. The AAHN also publishes a well-respected journal, Nursing History Review , where readers can find outstanding historical research by leading historians. There are also many archival centers around the country, such as the Barbara Bates Center for the Study of the History of Nursing at the University of Pennsyl - vania and the Eleanor Crowder Bjoring Center for Nursing Historical Inquiry at the Univer - sity of Virginia. Centers such as these provide a wealth of archival data and support for those interested in historical research. The websites for these centers and other resources are avail - able on the AAHN website.

Nursing’s Political Advocacy and Action The next part of this chapter moves from the historical to the contemporary and further ex - plores the meaning of advocacy and action, as well as what that means for nurses, the profes - sion, and the health of the public. Today nurses must be politically active in professional nursing practice and health policy issues like the nurse reformers and activists before them. Nurses who can purposefully and effectively contribute to and the Steel Corporation whereby the Rural Nursing Service would “undertake nursing for these large concerns” (American Red Cross Town & Country Nursing Service, 1913, p. 4). Many of the communities in question were rural mining communities that required public health nursing services. The committee believed this relationship would be beneficial in many ways, including pos - sibly raising the standards of other nursing asso - ciations and economically supporting the cost of nursing supervision in these locations. Advocacy took many forms, which ranged from sitting on national committees to seeing that care was provided at local levels. The work of the public health nurse was framed by the needs of the community, the kinds of public healthcare organizations that were organized, and the geographical location. Each Red Cross rural nurse chapter—whether in the moun - tains of New Hampshire, in Kentucky, or in the West—directed the kinds of work that public health nurses would do, including bedside care for frostbite, well-baby clinics, school nursing, industrial nursing, classes in home hygiene and care of the sick, advocacy on town boards, and educational and publicity efforts about their work (Fox, 1921). Sometimes there was only one pub - lic health nurse in an area. At other times, pub - lic health nurses shared a district. Sometimes a nurse faced barriers by communities that were uncomfortable with outsiders offering care. The success of these American Red Cross Town & Country nurses relied on the ability to recruit and retain those who could handle the challenges of rural settings. This concern remained a constant and enduring problem throughout the life span of the American Red Cross Town & Country.

▸ History and Political Advocacy Political advocacy requires the depth and breadth of an evolving historical narrative to inform con - temporary debates in health care, to reflect the variety of perspectives that history can bring to History and Political Advocacy 9 Association suggests that high-quality nursing practice include advocacy as an essential aspect of patient care (ANA, n.d.). Advocacy is consid - ered both a philosophical principle of the profes - sion and a part of ethical nursing practice that ensures that the rights and safety of the patient are protected and safeguarded. Advocacy is the one professional construct that demonstrates a complex interaction among nurses, patients, professional colleagues, and the public (Se - landers & Crane, 2012). It is important to note that patients have rights and nurses have a le - gal and moral obligation to protect those rights.

As patient advocates, the ANA Code of Ethics for Nurses with Interpretive Statements (2015) offers nurses a moral framework to help shape their values to direct and influence actions so as inspire their advocacy. From the classroom to the bedside to the boardroom, nurses can leverage their professional expertise to provide the critical knowledge and analysis to transform public health policy and nursing practice. As stakeholders who are well prepared to engage in the policy-making pro - cess, nurses must stand ready to respond to an array of healthcare reforms confronting the na - tion’s delivery system by being full partners, with physicians and other healthcare professionals, in redesigning health care in the United States (IOM, 2010). Just as our “foremothers” before us, and in some cases fathers as well, nurses of the 21st century have an integral role in shaping and advancing policy solutions at a time when there is tumultuous political climate and a health care environment that may not clearly under - stand the values and contributions of nurses and nursing practice. Berkowitz (2017) recently described how important the need is for nurses to inform con - sumers about what nursing care is, including why and how it prevents illness, manages symp - toms, treats disease, and transforms the health of communities. Nickitas and Ferguson (2017) note how critical it is to advocate for and ensure that nurses globally can practice to the full scope of their education and licensure, have equal op - portunities for career development, and practice shaping public policy at the national, state, and local levels serve both the public and the profes - sion by advancing the nation’s health and pro - fessional practice. Nursing’s historical roots in important advocacy and action have shaped the profession’s political astuteness and work to keep pace with professional regulatory, statutory, and legal changes in education, practice, and research. The profession must remain nimble and responsive to policy changes by promoting and protecting the well-being of the population and nurses themselves. How can nurses have a profound influence on health outcomes? The answer is simple: We cannot afford not to. As long as the United States lags behind other de - veloped countries in care outcomes, despite the fact that the U.S. spends more on health care— $3.2 trillion in 2015, up 5.8% from the year be - fore (Centers for Medicare & Medicaid Services [CMS], 2015)—nurses need to advocate and act to promote health, prevent disease, and eliminate health disparities. Access to affordable, quality health care is a basic human right for all peo - ple (Daley, 2012). In 2010, Institute of Medicine (IOM), now known as the National Academies of Medicine, published its report, The Future of Nursing , which offered a blueprint for how the nursing profes - sion should advocate to improve the health of the nation, lead change in healthcare delivery, and increase the educational preparation of the nursing workforce. This blueprint is evidence on how nurses uphold the dignity and well- being of society by revolutionizing how nurses can be change agents and leaders in develop - ing healthcare delivery systems that will address health disparities and the social determinants of health like education, poverty, transportation, and housing. To effectively manage the ever-evolving healthcare delivery system, as well as the emerg - ing needs of populations and the profession, ev - ery nurse must understand and appreciate his or her role in advocacy. Advocacy is the ability to use one’s voice and position to address, sup - port, and protect the rights and interest of an - other (Zolnierek, 2012). The American Nurses 10 Chapter 1 Nursing’s History of Advocacy and Action work environment in their care (Smith, 1995).

By strengthening the protection of human rights and health equity, and promoting a Culture of Health, all can prosper and thrive. The next sec - tion of this chapter discusses how nurses will continue to amplify their voices and advocate to meet the changing landscape of health care.

▸ Nursing Strong Professional nursing care is essential to the healthcare system. Of the more than 3.6 million licensed registered nurses (RNs), approximately 84.7% are employed in nursing (62% in hospitals), and approximately 10% are employed in primary care or home care (U.S. Department of Health and Human Services, 2010, 2013), making reg - istered nursing the largest healthcare profession (ANA, n.d.). As such, nurses must advocate by bringing problems to the government and seek decisions in the form of programs, laws, regu - lations, or other official responses that create innovations and care models to transform the delivery and advance the nation’s health. To begin, nursing must advocate for changes within the profession. To successfully advance health care, the nursing profession must make significant strides to change the composition of the future workforce. This will require greater efforts toward the successful recruitment of underrepresented minorities into nursing.

Calculations of data from the U.S. Census Bureau (n.d.) reveal that the current RN work - force remains primarily female; the percentage of men in the workforce has increased to 12% from only 9% in 2001. Nurses from minority backgrounds represent 24% of the RN workforce.

Considering racial/ethnic backgrounds, the RN population is composed of 75.8% white, 11.5% black or African American, 4.8% His - panic or Latino, 5.8% Asian, 0.5% American Indian, 0.028% Native Alaskan, 0.2% Native Hawaiian/Pacific Islander, 0.1% Other Native, and 1% multiracial background (DATAUSA, 2018). The profession must do better to ensure that future nurses mirror the patient population in work environments that are free from vio - lence, harassment, and discrimination; these concerns are essential in today’s and tomorrow’s healthcare delivery system. To become engaged in advocacy, and to set the agenda for human resources and nursing resources for health care, nurses must be at the forefront of policy engage - ment, dialogue, and implementation. This en - gagement requires sound evidence and a political strategy that allows for increased understand - ing of the potential impact of linking the nurs - ing workforce with the globalization of health care, to ensure dignified and respectful health care for all persons, regardless of sexual orien - tation or gender identity (Nickitas & Ferguson, 2017). The demands for increased access and better healthcare outcomes will require nurs - ing to widen its influence in policy areas that address the health and healthcare needs of un - derserved and minority populations (Villarruel, Bigelow, & Alvarez, 2014). Nurses are essential healthcare providers and make significant con - tributions to the body of knowledge of improv - ing health and health care in the United States.

One way nurses can impact the nation’s health is to meet the 21st-century challenge of pop - ulation health management and population health. To meet this challenge, the Robert Wood Johnson Foundation (RWFJ; 2015) has com - mitted to advancing a national initiative called the Culture of Health by addressing key social determinants of health and empowering sup - port mechanisms to help people live healthier lives. A Culture of Health involves creating in - creased collaboration among healthcare systems.

For community organizations, this means mak - ing health a shared value, creating healthier and more equitable communities, and strengthen - ing the integration of health services and sys - tems (Martsolf et al., 2016). As political advocates, nurses are uniquely positioned to lead system change to improve care for populations and contribute to a Culture of Health in their communities by focusing on the patient and family-centered care. Nurses natu - rally view their patients holistically and seek to include all aspects of family, community, and Nursing Strong 11 Fostering interprofessional education and prac - tice builds the health team’s capacity to view high-risk vulnerable and underserved pop - ulations as a moral imperative and, as such, bring important perspectives to designing and delivering health services that are transforma - tive to improving health, lowering costs, and increasing patient satisfaction. To address care gaps and avoid service du - plication, improve the quality of patient-centered care, and control costs within and across set - tings, nurses must understand and interpret legislation and health policy. By being able to interpret healthcare reform from a nursing per - spective, nurses can determine how to best dis - tribute resources to individuals, families, and populations. For example, chronic disease is the central healthcare problem in the United States and is the leading cause of disability and death in the United States (Centers for Disease Control and Prevention, 2015; Miller, Lasiter, Bartlett Ellis, & Buelow, 2015). In fact, nearly one in two Americans suffers from chronic con - ditions such as diabetes, arthritis, hypertension, and kidney disease; these account for 7 of 10 deaths among Americans each year and 75% of the nation’s healthcare spending (Conway, Goodrich, Macklin, Sasse, & Cohen, 2011). The obesity epidemic and growing levels of prevent - able diseases and chronic conditions greatly contribute to the high costs of health care. Additionally, an aging population has in - creased the demand to address end-of-life care in a cost-effective manner (Rice & Betcher, 2010). Because chronic disease remains the pri - mary healthcare problem in the United States, nurses can lead change to improve the healthcare system at the population level (Lathrop, 2013; Miller, Lasiter, Bartlett Ellis, & Buelow, 2015).

As skilled researchers and clinicians, nurses are in key positions to advocate, lead, and partic - ipate in interprofessional initiatives, commu - nity coalitions, and policy enactments. Being a nurse advocate means joining the ranks of the nation’s care decision makers in order to become full partners in redesigning health care (IOM, 2011; Peltzer et al., 2015). for which they will provide nursing care. The recruitment of indivdiuals from underrepre - sented groups in nursing— specifically men and individuals from African American, His - panic, Asian, American Indian, and Native Alaskan backgrounds—is a major priority for the nursing profession. There is a moral imperative to achieve eq - uity and diversity, which involves increasing underrepresented groups in nursing, embrac - ing the policy process, and creating a cultur - ally and linguistically diverse care environment. A diverse healthcare workforce increases both minority participation in the health professions and a commitment towards cultural compe - tency in the treatment of all patients. A U.S.

Department of Health and Human Services report (2006) reveals that increased diversity among healthcare professionals leads to im - proved patient satisfaction, improved patient– nurse communication, and greater access to care for racial and ethnic minority patients who are best served by providers who are knowl - edgeable about their backgrounds and cul - tures. Increasing workforce diversity, ensuring fair and equal access to quality health care and healthcare resources, eliminating health dis - parities, and achieving health equity is where nursing’s political advocacy and action upholds the dignity of all people through our actions and our words. The U.S. Department of Health and Human Services and Healthy People 2020 (2013) define health equity as the attainment of the highest level of health for all people. Achieving health equity for all requires a collective effort across all disciplines and all sectors, including those outside nurs - ing. Therefore, nurses must align themselves with other healthcare professionals to address health disparities and health equity, specifically within the context of the social determinants of health. As an interprofessional healthcare team, all professionals must “draw upon their moral responsibility to respond to human suffering and become acknowledged partici - pants in the nation’s efforts to correct health disparity” (Harrison & Falco, 2005, p. 261). 12 Chapter 1 Nursing’s History of Advocacy and Action depend on their ability to give voice to a his - torical perspectives that recognize the political and contextual forces that shape health care and place nursing at the center of long-standing de - bate about health services delivery, knowledge formation, patient safety, technology and edu - cation for practice” (p. 351). To design and de - liver health services that are transformative in the direction that our nation needs at this mo - ment in time, we must remember how nursing’s historical influences of the past shape our ad - vocacy and actions of the future.

Discussion Questions 1. How does history inform nursing’s efforts to provide primary health care? 2. What is the relevance of nursing’s history to political advocacy today? 3. Describe the role of advocacy within the history of nursing’s development in the United States. 4. Select a community or population with which you could become a full partner in re designing and improving health out - comes to address a contemporary public health issue impacting this community or population, such as access to care, transportation, water safety, pollution, or gun safety. References American Academy of Nursing, Diversity and inclusivity statement . (2016). Retrieved from https://higherlogic download.s3.amazonaws.com/AANNET/c8a8da9e -918c-4dae-b0c6-6d630c46007f/UploadedImages/docs /Governance/2016%20AAN%20Proposed%20Revised %20Diversity%20Statement_FINAL.pdf American Association of the Colleges of Nursing. (2017). American Association of the Colleges of Nursing (AACN) position statement on diversity, inclusion, and equity in academic nursing. Journal of Professional Nursing , 33(2017), 173–174. Retrieved from http:// dx.doi.org/10.1016/j.profnurs.2017.04.003 American Nurses Association. (2010). Nursing’s social policy statement: The essence of the profession (2010 edition). Silver Spring, MD: Author. American Nurses Association. (2015). Code of ethics for nurses with interpretive statements . Silver Spring, MD: Author. ▸ Conclusion The concepts of advocacy and action serve as a reference and model for the future, demonstrat - ing that all nurses can develop their influence and policy acumen to equip themselves with the knowledge and tools needed to serve the profession, healthcare organizations, and soci - ety. As the nursing profession reflects upon its historical roots in advocacy and action, nurses will strive to find innovative ways to advance the nation’s health to reshape healthcare de - livery, policy, and payment. These innovations must address the key social determinants of health that will empower and support all peo - ple to lead healthier lives. Developing competencies in advocacy and action requires a clear understanding of how to create healthier and more equitable communi - ties as well as strengthening health services and systems, creating diverse policy solutions, and building a consensus for evaluating policy solu - tions. For those who are just beginning to learn the advocacy process, it is important to recog - nize that there will always be divergent views around policy solutions, but the best solutions are those where diverse viewpoints are always heard, considered, and reflect consensus. With over 3 million strong, nurses have pro - vided evidence and reasoned solutions to health - care problems. This chapter has addressed how nurses have had a long and vital history of ad - vocacy and social action. It is through this ef - fort towards improving health outcomes for individuals, families, communities, and popu - lations that nurses are a valuable link to educate policymakers about health issues and promote policies to address contemporary public health issues. These issues include public health and emergency preparedness, food safety, hunger and nutrition, climate change and other envi - ronmental health issues, public health infra - structure, disease control, international health, and tobacco control (American Public Health Association, 2017). Fairman and D’Antonio (2013) note that “nurses successes in moving policy forward will 13 References Fairman, J. (2017). Foreword. In S. B. Lewenson, A. M. McAllister, & K. M. Smith (Eds.), Nursing history for contemporary role development. New York, NY: Springer Publishing Company. Fairman, J., & D’Antonio, P. (2013). History counts: How history can shape our understanding of health policy. Nursing Outlook , 61(5), 346–352. Fox, E. (1921). Red Cross public health nursing, out to sea. Public Health Nurse , 13, 105–108. Gibson, M. E. (2017). School nursing: A challenging strategy in rural health care in the United States. In S. B. Lewenson, A. M. McAllister, & K. M. Smith (Eds.), Nursing history for contemporary role development (pp. 37–58). New York, NY: Springer Publishing Company. Harrison, E., & Falco, S. M. (2005). Health disparity and the nurse advocate: Reaching out to alleviate suffering. Advances in Nursing Science , 28(3), 252–264. Hartman, M., Martin, A. B., Benson, J., & Catlin, A. (2013). National health spending in 2011: Overall growth remains low, but some payers and services show signs of acceleration. Health Affairs, 32 (1), 87–99. doi:10.1377/ hlthaff.2012.1206 Hine, D. C. (1989).  Black Women in White: Racial Conflict and Cooperation in the Nursing Profession 1890-1950 . Bloomington, IN: Indiana University Press. Institute of Medicine. (2010). The future of nursing: Leading change, advancing health . Washington, DC: National Academies Press. Keeling, A. (2007). Nursing and the privilege of prescription, 1893–2000 . Columbus, OH: Ohio State University Press. Keeling, A., & Lewenson, S. B. (2013). A nursing historical perspective on the medical home: Impact on health care policy. Nursing Outlook , 61(5), 360–366. http://dx .doi.org/10.1016/j.outlook.2013.07.003 Lathrop. B. (2013). Nursing leadership in addressing the social determinants of health. Policy, Politics, & Nursing Practice, 14 (1), 41–47. http://dx.doi.org./10.1177/15271544 13489887 Lewenson, S. B. (1993). Taking charge: Nursing, suffrage, and feminism in America, 1873–1920 . New York, NY: Garland Publishing. Lewenson, S. B. (2012). A historical perspective on policy, politics, and nursing. In D. J. Mason, J. K. Leavitt, & M. W. Chafee (Eds.), Policy and politics in nursing and health care (6th ed., pp. 12–18). St. Louis, MO: Elsevier Saunders. Lewenson, S. B. (2017, September). Designation 1-A: The African-American experience in the American Red Cross Town and Country, 1912–1918. Paper presented at the American Association for the History of Nursing, Fairport, NY. Martsolf, G. R., Gordon, T., May, L. W., Mason, D. Sullivan, C., & Villarruel, A. (2016). Innovative nursing care models and culture of health: Early evidence. Nursing Outlook, 64(4), 367–376. American Nurses Association. (n.d.). Advocacy . Retrieved from http://www.nursingworld.org/Main-MenuCategories /ThePracticeofProfessional-NursingPatientSafetyQuality /Advocacy.aspx American Public Health Association. (2017). Topics & issues . Retrieved from https://www.apha.org/topics-and-issues American Red Cross Rural Nursing Service. (1912–1914). Circular for application. Rockefeller Sanitary Commission microfilm (Reel 1, Folder 8, Rockefeller Archives). Pocantico, NY: American Red Cross Town & Country Nursing Service. American Red Cross Town & Country Nursing Service. (1913). Minutes of the third meeting of the Committee on Rural Nursing. Rockefeller Sanitary Commission microfilm (Reel 1, Folder 8, Rockefeller Archives). Pocantico, NY: American Red Cross Town & Country Nursing Service. Baer, E. D., D’Antonio, P., Rinker, S., & Lynaugh, J. E. (2001). Enduring issues in American history . New York, NY: Springer Publishing Company. Berkowitz, B. (2017, July–August). Valuing science. Nursing Outlook, 65 (4), 351–352. Birnbach, N., & Lewenson, S. (Eds.). (1991). Work of women in municipal affairs. First words: Selected addresses from the National League for Nursing 1894–1933 . New York, NY: National League for Nursing. Buhler-Wilkerson, K. (2001). No place like home: A history of nursing and home care in the United States . Baltimore, MD: Johns Hopkins University Press. Centers for Disease Control and Prevention. Leading causes of death and numbers of deaths, by sex, race, and Hispanic origin: United States, 1980 and 2014 (Table 19).  Health, United States, 2015 .  Retrieved from https://www.cdc .gov/nchs/data/hus/hus15.pdf#019 Center for Studying Health System Change. (2008, December). Making medical homes work: Moving from concept to practice. Policy Perspective: Insights into Health Policy Issues . Retrieved from http://www.hschange.org/CONTENT /1030/1030.pdf Centers for Medicare & Medicaid. (2015). National health expenditures 2015 highlights. Retrieved from https:// www.cms.gov/Research-Statistics-Data-and-Systems /Statistics-Trends-and-Reports/NationalHealthExpendDate /downloads/highlights.pdf Conway, P. H., Goodrich, K., Macklin, S., Sasse, B., & Cohen, J. (2011). Patient-centered care categorization of U.S. health care expenditures. Health Services Research , 46(2), 479–490. Daley, K. (2012, September–October). Health care as a basic human right. The American Nurse . D’Antonio, P., & Lewenson, S. B. (Eds.). (2011). Nursing interventions over time: History as evidence . New York, NY: Springer Publishing Company. Dock, L. L., Pickett, S. E., Clement, F., Fox, E. G., & Van Meter, A. R. (1922). History of American Red Cross nursing . New York, NY: Macmillan. 14 Chapter 1 Nursing’s History of Advocacy and Action U.S. Department of Health and Human Services Health Resources and Services Administration. (2013). The U.S. nursing workforce: Trends in supply and education. Bureau of Health Professions, National Center for Health Workforce Analysis. Retrieved from http://bhpr .hrsa.gov/healthworkforce/reports/nursingworkforce /nursingworkforcefullreport.pdf U.S. Department of Health and Human Services. (2006). The rationale for diversity in the health professions: A review of the evidence . Retrieved from http://bhpr.hrsa.gov /healthworkforce/reports/diversityreviewevidence.pdf U.S. Department of Health and Human Services. (2010). The registered nurse population: Findings from the 2008 National Sample Survey of Registered Nurses . Rockville, MD: Author. U.S. Department of Health and Human Services. (2013a). Health equities and disparities. Office of Minority Health. National Partnership for Action to End Health Disparities. Retrieved from http://www.minorityhealth.hhs.gov /npa/templates/browse.aspx?lvl =lvlid =34 U.S. Department of Health and Human Services. (2013b). Foundation health measures: Disparities. HealthyPeople. gov. Retrieved from http://www.healthypeople.gov/2020 /about/disparitiesAbout.aspx U.S. Department of Labor. (2014). Labor force characteristics by race and ethnicity, 2014. Retrieved from http://www .bls.gov/opub/reports/race-and-ethnicity/archive/labor -force-characteristics-by-and-ethnicity-2014.pdf Villarruel, A., Bigelow, A., & Alvarez, C. (2014). Integrating the 3Ds: A nursing perspective. Public Health Reports , 2(129), 37–44. Wald, L. (1915). The house on Henry Street. New York, NY: Henry Holt & Company. Zolnierek, C. (2012). Speak to be heard: Effective nurse advocacy. American Nurse, 7 (10), 1. Miller, W. R., Lasiter, S., Bartlett Ellis, R., & Buelow, J. M. (2015). Chronic disease self-management: A hybrid concept analysis. Nursing Outlook, 63 (2), 154–161. Nickitas, D. M., & Ferguson, S. (2017). Investing in nursing: Improving health, gender equality, and economic growth. Nursing Economics, 35 (4), 158, 183. Orszag, P. R. (2008). The overuse, underuse, and misuse of health care. Testimony before the U.S. Senate Committee on Finance. Retrieved from http://www.cbo.gov/sites /default/files/cbofiles/ftpdocs/95xx/doc9567/07-17 -health-care_testimony.pdf Peltzer, J. N., Ford, D. J., Shen, Q., Fischgrund, A., Teel, C. S., Pierce, J. Jamison, M., & Waldon, T. (20153, March–April). Exploring leadership roles, goals, barriers among Kansas registered nurses: A descriptive cross-sectional study. Nursing Outlook, 634 (2), 117–123. Phillips, J., & Malone, B. (2014). Increasing racial/ethnic diversity in nursing to reduce health disparities and achieve health equity. Public Health Reports , 2(129), 45–50. Pitt-Mosley, M. O. (1996). Satisfied to carry the bag: Three black community health nurses’ contributions to health care reform, 1900–1937. Nursing History Review , 4, 65–82. Rice, E., & Betcher, D. (2010). Palliative care in an acute care hospital: From pilot to consultation service. MEDSURG Nursing , 19(2), 107–112. Robert Wood Johnson Foundation. (2015). From vision to action: Measures to mobilize a Culture of Health. Princeton, NJ: Author. Selanders, L. C., & Crane, P. C. (2012). The voice of Florence Nightingale on advocacy. Online Journal of Issues in Nursing , 17(1) Manuscript 1. Smith, M. C. (1995). The core of advanced practice nursing. Nursing Science Quarterly , 8, 2–3. U.S. Census Bureau. (n.d.). American FactFinder. American Community Survey. 2014–2015. Retrieved from http://www.census.gov/programs-surveys/acs 15 References a medical provider or self-exams, are no longer recommended. (American Cancer Society, 2015) Therefore, women should have mammograms as desired or as suggested by their healthcare provider based on their personal medical history and risk factor(s). This relies on the fact that a person has health insurance that covers these costs or is able to go to a free or reduced cost clinic such as Planned Parenthood (PP) for health care and screenings. Planned Parenthood and other clinics rely on funding from the federal government to assist in the costs for these services. Planned Parenthood follows the recommendations of the American Cancer Society regarding breast self-exam and can refer a person to a medical site where mammograms are done as needed. Planned Parenthood may be the only option for a woman to receive the necessary care for a breast cancer screening referral. However, if the U.S. Congress decides to reduce or completely remove funding to Planned Parenthood, what will those women do for breast cancer screening? Congress assesses what monies will go to what groups and establishments based on a number of factors, including what is the agenda of the president and Congress at the time, what is beneficial for and needed by certain congressional districts, and other special interests. According to the American Public Health Association (APHA) (2017) and other websites, the federal government does not directly fund Planned Parenthood, but rather reimburses states that have paid Medicaid bills for services by such clinics as Planned Parenthood.

According to their annual report in 2015–2016, Planned Parenthood received 41% of their operating costs from government health services reimbursement and grants. With a portion of this money, Planned Parenthood did 321,700 breast exams and diagnosed 72,012 incidences of cancer through breast exams and Pap smears. If PP did not have this funding, these numbers would probably be much lower because some women would not have this care due to the inability to pay for it. For the past few years there has been a rolling debate about healthcare access and whether the federal and/or state governments will fund the health care needed by the working poor and uninsured who may not have the funds to pay for a mammogram. Initially, it seemed as though CASE STUDY Strength Is in Coalitions Pennie Sessler Branden Purpose of the Case Study The purpose of this case study is to describe an exemplar where nursing advocacy can be more effective through strong coalitions and partnerships.

The Case Study Breast cancer is the second most common form of cancer in women and is the second leading cause of cancer deaths. According to the American Cancer Society (ACS) (2017) breast cancer will affect 1 in 8 women during their lifetime and about 1 in 37 women will die of breast cancer. The statistics show that women of color and those in poverty have a higher incidence of breast cancer than white middle- and upper-class women. Breast cancer screening has been utilized to diagnose breast cancer early enough to improve the treatments, interventions, and outcomes for breast cancer. With 90% of registered nurses (RNs) being female, the American Nursing Association (ANA) (American Nurses Association, n.d.) has educated nurses to better understand breast cancer risk factors and the importance of regular screening. Nurses and other healthcare providers look to the ACS recommendations for mammogram schedules. These recommendations have gone through a number of permutations, but since 2015 the American Cancer Society recommendations state: Women with an average risk of breast cancer—most women—should begin yearly mammograms at age 45. Women should be able to start the screening as early as age 40, if they want to. At age 55, women should have mammograms every other year—though women who want to keep having yearly mammograms should be able to do so. Regular mammograms should continue for as long as a woman is in good health. Breast exams, either from 16 Chapter 1 Nursing’s History of Advocacy and Action CASE STUDIES have recognized the importance of building partnerships and coalitions in order to maximize their efforts and have deliberately partnered with groups and organizations that support the many issues that nurses support. If Congress is only looking at the cost of care given by Planned Parenthood clinics we must look at the entire picture of cost of preventive care versus the cost of breast cancer treatment. With these statistics, one would think that breast cancer screening, which can reduce cost and suffering, would be covered by insurance. The Affordable Care Act (ACA) covers an annual mammogram, as do most insurance companies as mandated by the ACA. The average cost for a mammogram is $456 (MDsave, 2018). According to a retrospective analysis by Blumen, Polkus, and Fitch (2016), the costs of complete breast cancer treatment for 1 year were from $60,637 for Stage I/II treatments up to $134,682 for Stage IV treatments. Not only will there be costs for breast cancer care but there will be potential loss of wages affecting partners and families in addition to an immeasurable psychologic toll. This huge disparity in costs for preventive mammograms and the overall cost for treatment seems to emphasize the importance of preventive care over the need to wait and treat women who get breast cancer. However, with the potential changes in the ACA and the current unemployment and underemployment numbers, what happens to those women who cannot afford the cost of a mammogram or the cost of insurance?

Blumen and colleagues (2016) report that support for programs for breast cancer screening need to be implemented and strengthened to diagnose breast cancer and begin treatment earlier. With all of the political wrangling that occurs over the health and well-being of women, nurses have become advocates for these issues, and with their coalition partners have taken to Capitol Hill to educate their representatives and senators about the importance of healthcare coverage to include things like breast cancer screening. To accomplish this, (1) nurses will continue to educate their colleagues, patients, and families; (2) nurses will continue to meet with their representatives on the state and federal levels; (3) the ANA will continue to write position statements and nurses will testify in front of legislators; and (4) nurses need to bring real stories to their legislators about women with breast cancer who have benefitted from healthcare the Affordable Care Act (ACA) would reduce these disparities, and it has. However, some state governments have found ways to reduce the potential advantages that the ACA offers. For example, in New Jersey (NJ ), Medicaid funding for clinics that gave patients family-planning and well-women care along with referrals for mammograms was completely eliminated by Governor Christie in 2010 (Culp-Ressler, 2015).

Christie vetoed those spending bills five times in 5 years. Consequently, between 2010 and 2015, there was a 25.1% increase in breast and cervical cancer cases in Latina women in New Jersey. This was five times higher than women overall in that state (Culp-Ressler, 2015). Clearly the elimination of this funding has affected and will affect overall screening and care of vulnerable groups unable to pay for these expensive services. Contrary to this, a mid-July 2017 article by Brodesser-Akner reports that NJ legislators have enough votes with Democrats and Republicans together to override a governor’s veto for $7.5 million for funding to family-planning clinics, including Planned Parenthood. They believe that the previous vetoes have significantly reduced opportunities for NJ women to obtain necessary health care and that this funding is integral to improving the health of all NJ women. New Jersey is just one example of the ongoing divisiveness that has taken place over the funding of family planning and women’s health clinics by state and federal governments.

This is not a new debate but one that has been in discussion for decades. The American Public Health Association (APHA) published a policy statement in 1991 emphasizing that minority women are at higher risk of death from breast cancer than white women and that education and regular screening are integral to the efforts of healthcare providers to reduce the occurrence of breast cancer and to improve overall outcomes.

Even with this data-driven information, the federal government currently wants to eliminate funding to Planned Parenthood, thus potentially reducing access to breast exams and early detection of breast cancer for the millions of women who utilize these clinics annually. Nurses have been involved in lobbying efforts to better educate and assist our representatives to understand the importance of breast screening for all women regardless of socioeconomic status. Further, nurses Case Study 17 CASE STUDIES Summary This case study is one relevant example of the potential for possible negative outcomes related to decreased funding by governmental agencies; it also delineates the potential positive outcomes that are achieved with partnering, collaboration, and coalition building. Even though the issue of continued funding for Planned Parent clinics is not addressed directly, successes can be made incrementally that will increase support of important healthcare programs moving forward. Advocacy, in order to influence policy, is best operationalized through partnerships, collaboration, and coalitions. Although someone in power, such as Governor Christie, can veto a bill to reduce funding to a particular group, the representatives in the New Jersey legislature can introduce bills that can, with a bipartisan majority, override a veto by the governor. Similarly, the Connecticut Nurses Association maximizes its efforts through collaborating and partnering with various groups to form strong influential coalitions that can educate legislators about all of the pieces of breast cancer prevention and care.

The combined efforts, along with the increased numbers of individuals actively participating in the process, enhances the work of lobbyists, who in turn influence the policymakers. The overall consequence is the increase in the voice of the public that influences the outcomes. This influence enhances the possibility of providing more adequate healthcare services to all citizens.

Case Study Questions 1. This case is a good example of nursing power through building partnerships and coalitions that have similar missions. Can you identify two coalitions that your state nursing association actively works with? Can you describe the policy issues that these coalitions address? 2. Successful advocacy is best defined as moving toward the ultimate goal(s) in a positive, substantive manner. Explain what advocacy you have done, besides direct patient advocacy, to support health care in your nursing specialty. References American Cancer Society. (2015, October 20). American Cancer Society releases new breast cancer guideline. Retrieved from access and insurance, as well as stories where a person suffered due to lack of access and/or insurance. Nurses will continue to advocate for their patients and what is best for them by enlarging their reach through coalitions and partnerships.

The Connecticut Nurses Association (CNA) is guided each year by their Connecticut (CT ) legislative agenda and their prioritization of issues, which is informed by nurses and their relationships and partnerships with organizations across the healthcare and health spectrum.

The CNA regularly engages in advocacy on health and nursing throughout the year and during the legislative session. To address the widespread impact of healthcare reform, the CNA is actively involved in the campaign entitled Protect Our Care CT (PCCT ) (Connecticut Nurses Association, 2017). PCCT represents a coalition of organizations and individuals to support and represent the health needs of people of CT, including those who rely on the ACA, Medicare and Medicaid, and women’s health programs (personal interview Clear Sandor, 2017). For example, the CT Senate Bill 586 supported state Medicaid expansion of health benefits for children and women (State of Connecticut General Assembly, 2017). There is a long history of CNA’s active participation in the state regarding access to essential services and their partnership with other groups and coalitions; the CNA has supported this bill for increased essential benefits and access to care and members have been very vocal about this to their legislators through lobbying efforts, letters, etc. Although the bill does not increase funding for or access to breast screening mammograms, it does mandate breast cancer counseling, genetic testing, and risk assessment. In the future this bill could be expanded to include mandated mammograms no matter what a person’s insurance status is. This is an example of the impact of indirect action by multiple groups, including nurses, in strong coalitions. The CNA works collaboratively with its coalitions to strategically exert its influence and increase its voice on multiple healthcare issues that affect women. Coalition building is a key piece of being heard and getting legislation passed. Coalitions have provided nurses with a strong voice and enhanced their ability to provide high-quality, safe care.

18 Chapter 1 Nursing’s History of Advocacy and Action CASE STUDIES http://www.nj.com/politics/index.ssf/2017/07/christie _facing_open_rebellion_as_gop_lawmakers_vo.html Connecticut Nurses Association. (2017). CT coalition to advocate for health coverage . Retrieved from http://cqrcengage .com/ctnurses/home Culp-Ressler, T. (2015, February 26). The human costs of Chris Christie’s attack on Planned Parenthood . ThinkProgress. Retrieved from https://thinkprogress.org/the-human -costs-of-chris-christies-attack-on-planned-parenthood -b565d0bd790d MDsave Incorporated. (2018). How much does a mammogram screening cost? Retrieved from https://www.mdsave .com/procedures/mammogram/d786fcc5 Personal interview: Kimberly Clear Sandor. (August 1 and 9, 2017).Planned Parenthood (2017, July 26). Annual Report 2015-2016. Retrieved from https://www.plannedparenthood.org /uploads/filer_public/18/40/1840b04b-55d3-4c00-959d -11817023ffc8/20170526_annualreport_p02_singles.pdf Reger, A. (2015, September 23). State statutes on breast cancer screening and coverage. Connecticut Office of Legislative Research Research Report 2015-R-0210. Retrieved from https://www.cga.ct.gov/2015/rpt/pdf/2015-R-0210.pdf State of Connecticut General Assembly. (2017, January). Senate Bill No. 586 . Retrieved from https://www.cga .ct.gov/2017/TOB/s/2017SB-00586-R01-SB.htm https://www.cancer.org/latest-news/american-cancer -society-releases-new-breast-cancer-guidelines.html American Cancer Society. (2017). About breast cancer. Retrieved from https://www.cancer.org/content/dam/CRC/PDF /Public/8577.00.pdf American Nurses Association. (n.d.). Women’s health . Retrieved from https://www.nursingworld.org/practice-policy/work -environment/health-safety/healthy-nurse-healthy-nation /womens-health/ American Public Health Association. (2017). Cervical and breast screening. Retrieved from https://www.apha .org/policies-and-advocacy/public-health-policy -statements/policy-database/2014/07/29/13/51 /cervical-and-breast-screening Blumen, H., Polkus, V., & Fitch, K. (2016, February) Comparison of treatment costs for breast cancer, by tumor stage and type of service. American Health & Drug Benefits for Payers, Purchasers, Policymakers, and Other Healthcare Stakeholders , 9(1). Retrieved from http://www .ahdbonline.com/articles/2076-comparison-of-treatment -costs-for-breast-cancer-by-tumor-stage-and-type -of-service Brodesser-Akner, C. (2017, July 12). Christie faces rebellion from 5 Republican lawmakers over Planned Parenthood funding. Advance Media for New Jersey. Retrieved from Case Study 19 CASE STUDIES in politics, which she defines as “public service,” is her early commitment to caring for the homeless in community health nursing, which became the foundation of her academic career: to understand policy and serve “the many.” She attributes her incremental successes, beginning from the day when she was late to her graduate school class, to being coached by mentors such as Catherine Malloy in Charleston, South Carolina, with whom she continued to work throughout her doctoral program in nursing administration and policy at George Mason University. Using what she learned from her study of health policy, she became active in her local city government and organizations such as the League of Women Voters and a federal health clinic that served the homeless. In these experiences, public policy was “made real” and prompted her continued volunteer service in other nonprofit organizations. She claims that she learned from working with these groups that as nurses, we do not have to stay in our lane of just working with other nurses.

She learned how to organize, to use her health knowledge to work for things that people care about, and to build coalitions of groups for action.

She says that a leader at the League of Women Voters told her that she “had what it takes—drive, personality, and skills—to think about running for office,” which she tucked away at that time. With her husband in the military at the time, she moved to Washington D.C. Entering the doctoral program, still moonlighting as a nurse, she continued to grow into real public policy experiences that were fueled by taking care of homeless veterans and at-risk populations. To make a real impact, she believed that we had to elect nurses who could make a difference, but she realized she needed experience to be taken seriously. Along the way, it was nurse mentors who connected her with Capitol Hill opportunities on an assignment that would influence a dissertation and numerous other connections, including Bob Dole and Ted Kennedy from a U.S. Senate Committee. While a student, she served as a U.S. Senate Fellow and a U.S. Department of Health and Human Services policy analyst for the Secretary’s Commission on Nursing. In her own words, she was not afraid to pick up the phone, encouraged by her mentor, and ask if the national commission studying the nursing shortage needed a policy graduate student—for CASE STUDY A Career in Politics to Role Model:

Bethany Hall-Long’s Nursing Pathway to the Lieutenant Governor’s Office in Delaware Veronica D. Feeg A career in politics might be the aspiration for a college student in political science or pre-law, but is seldom one for a nursing student. In fact, courses in health policy or politics may be absent or scarce in nursing undergraduate or graduate curricula, and the notion to become active in politics is unlikely. In fact, Bethany Hall-Long, first woman Lieutenant Governor of Delaware, would be the first to admit that it was not in her plans in the beginning of her personal journey. In fact, she attributes her current position, stated with candor in her numerous inspirational presentations to nurses over the years, to her tardiness for class when the only seminar topic left for students to choose was about nurses in politics—and she was “stuck with it” (personal interview Hall-Long, 2017). Although she only learned after she won her first race in 2002 that her great-grandfather had been a member of the Delaware House of Representatives, she had little kitchen table discussion about politics growing up. In fact, her farm upbringing and spiritual roots in rural Delaware taught her about taking care of people— “where much is given, much is expected, and it is how you treat the least among us” (personal interview Hall-Long, 2017)—but not about public policy. What is noteworthy in this model career 20 Chapter 1 Nursing’s History of Advocacy and Action CASE STUDIES issues that matter to nurses—jobs, environment, transportation, and environmental justice, as well as health care in general and women’s health in particular. Returning as a faculty member to Delaware, her home state, she decided that her public health and health policy student assignments gave her reasons to run because:

(a) she desired to make a significant contribution; (b) she had been well prepared to understand process and as a nurse, she already understood the needs; and (c) the opportunity presented itself to run for the Delaware General Assembly. In her own words, her public life since 2000 did not begin smoothly—she won the primary but lost her first race by 1% in a race against a long-term male incumbent. But she says that she learned from that experience, pulled herself up by her bootstraps, ran again in 2002, and won in a tough election against the local school board president. She served continuously as the first nurse elected to the Delaware General Assembly from 2003 to 2017, as a member of the Delaware House of Representatives from 2003 to 2009, and then in the Delaware Senate from 2009 to 2017. She lists among her accomplishments cosponsoring a range of legislation including the Governor’s Cancer Council and the Health Fund Advisory (Master Tobacco Settlement) Committee. She was the prime House sponsor of legislation creating a cancer consortium for Delaware. She cosponsored a blue ribbon task force to analyze the problem of chronic illness in Delaware and make policy recommendations. She cosponsored needle exchange legislation that has made an impact on HIV infection rates, and she updated the state’s indoor tanning laws to prohibit children under age 14 years from using tanning beds and for those age 14 to 18 years to require parental consent (Hall-Long, 2007, 2012).

Among her legislative accomplishments during her Senate years, she chaired several important committees including health care, community and county affairs, transportation committee, veterans committee, and insurance committee, among others, where nurses can play a significant role. Her political campaigns and subsequent elections over these years are remarkable (see TABLE 1-1), but she acknowledges that it is not easy to run for office. She describes “running” for office as just that: experiences good and bad teach us how to continue on a path if we are passionate free. This opportunity gave her access to the four presidents of the Tri-Council for Nursing (American Nurses Association [ANA], National League for Nursing [NLN], American Association of Colleges of Nursing [AACN], and American Organization of Nurse Executives [AONE]) at age 25. She grew friendships and experience that laid the framework for her dissertation. Lt. Governor Hall-Long’s doctoral dissertation is noteworthy: A Policy Process Model: Analysis of the Nurse Education Act (NEA) of 1991–1992. Along with her work in politics, she studied the policy process, knowing clearly that public service mandates an understanding of public policy. This exploratory case study examined a theoretical model and applied it to explain the Tri-Council for Nursing’s political efforts during the reauthorization of the Nurse Education Act that year. She interviewed members of the Tri-Council for Nursing, U.S.

Division of Nursing, and U.S. Congressional staff, and examined 75 public documents and records as secondary sources of data. Her findings supported the conceptual categories and organization of the model and its ability to discern differences among political actors and corresponding policy stages. This grounding and depth of understanding would serve her well in her subsequent political journey, recognizing fully that in order to improve services or make substantial change for the health of constituents, one needs to know the underlying policy and politics that are successful. Over these years, she became active with the Democratic Party, working on political campaigns and serving to connect with nonprofit organizations and groups. She worked on community issues that were important and continue today: homelessness, housing, jobs, economic opportunity, and women’s and children’s issues, particularly infant mortality prevention through improving access for disadvantaged young mothers. She developed relationships in the community and in politics. She says that it was working with Mark Warner, who became Governor of Virginia and is currently a U.S. Senator, that she got her grassroots experience on the campaign trail together. She believed that she could enlighten and inform policymakers who do not understand nursing or health care. To most politicians, nurses are all the same and she was determined to be at the table to educate about Case Study 21 CASE STUDIES grew up in a rural household, she is a descendent of Delaware’s 15th governor, so it might have been her destiny to have a life in politics. She serves as the President of the Senate, a legislative body she has known for 8 years. As Lieutenant Governor she is proud to be able to influence the policy agenda in some roles and serve the state in her leadership role in moving systems issues such as health reform, workforce training, and mental illness. The political career of Bethany Hall-Long should be an inspiration for nurses who are dissatisfied with the status quo and passionate about making change to serve the needs of individuals who are disadvantaged. Her message to nursing students and professional nurses is that they should not leave policy making and governing to men in closed rooms anymore; they should seek out ways to influence and consider running for office. She attributes her passion and strength to her grandmother with an 8th grade (Hall-Long, 2007, 2012). She loves meeting people on the campaign trail and she believes that being a nurse gets her past the doorbell when going door to door in a race because people can instantly relate to you. She believes that her communication skills come directly from her nursing experience and her connection with the community. She encourages nurses to think beyond healthcare committees—to recognize that we are good at solving problems that may be outside our usual reach, and there is no limit to the list of public policy problems that we can tackle, including, but not limited to, childhood sports activities, palliative care, or opioid addiction, depending on our clinical expertise and interests. In January 2017, Bethany Hall-Long became the 26th Lieutenant Governor of Delaware. Her understanding of the policy process model that she developed in her dissertation continues to serve her well, and she notes that, although she Compiled from State of Delaware general election official results. (November 7, 2000; November 5, 2002; November 2, 2004; November 7, 2006; November 4, 2008). Dover, DE: Delaware Commissioner of Elections.

TABLE 1-1 Chronology of Bethany Hall-Long Elections Year Campaign/Election Outcome 2000 Ran against Republican Representative incumbent Richard Cathcart for District 9 seat. Lost 2002 Redistricted to District 8; ran unopposed in Democratic primary and against Republican nominee William Hutchinson in general election. Won (60.7%) 2004 Ran unopposed for Democratic primary and in general election. Won 2006 Ran unopposed for Democratic primary; ran against Republican nominee Edward Colaprete in general election. Won (77.0%) 2008 Ran unopposed for District 10 Senate seat; ran against Republican nominee James Weldin in general election. Won (64.9%) 2012 Incumbent; ran unopposed for Senate seat; ran unopposed in general election. Won 2016 Ran against Republican La Mar Gunn in Lieutenant Governor race. Won (59.4%) 22 Chapter 1 Nursing’s History of Advocacy and Action CASE STUDIES backgrounds that help them seek a public service life? 3. How can a political career unfold synergistically with a nurse’s ambition to run for political office? 4. Why is “running for office” described by politicians as a challenging personal experience? References Hall-Long, B. (2007). Vignette: farmgirl, nurse and legislator: My journey to the Delaware General Assembly. In D. J. Mason, J. K. Leavitt, & M. W. Chaffee (Eds.), Policy and politics in nursing and health care (5th ed, pp. 720–723). St. Louis, MO: Elsevier Saunders. Hall-Long, B. (2012). Chapter 17: Taking action: nurse, educator and legislator: My journey to the Delaware General Assembly. In D. J. Mason, J. K. Leavitt, & M. W. Chaffee (Eds.), Policy and politics in nursing and health care (6th ed, pp. 579–582). St. Louis, MO: Elsevier Saunders. Hall-Long, B. (1993). A policy process model: Analysis of the Nurse Education Act of 1991–1992. Dissertation at George Mason University, Fairfax, VA. University of Michigan, Ann Arbor, MI. Personal interview: Bethany Hall-Long. (February 20, 2017). education who vociferously advocated that women should be well educated. Lt. Governor Hall-Long’s advice to those with aspirations to impact “the many” is to get prepared, study the policy process, and become experienced in ways to communicate with all types of stakeholders on the issues, from classrooms to boardrooms to community involvement. Volunteer and do not be intimidated. This public servant, from rural roots to a nursing graduate education that includes a PhD, brought her passion for people and her skills in community nursing to the State House in Delaware, second to Governor Carney, and still has gas in the tank to go farther. Her career story should inspire other nurses—who she claims already have the skill set and knowledge to work with people—to pursue public service in the political arena so that the most vulnerable among us can be heard.

Case Study Questions 1. Which of Lt. Governor Hall-Long’s list of nursing accomplishments played a role in her journey in politics? 2. What knowledge and characteristics are natural components of nurses’ professional Case Study 23 CASE STUDIES © Anthony Krikorian/Shutterstock Policy and Politics Explained Nancy Aries OBJECTIVES ■ Define policy (generally) and health policy (specifically). ■ Explain the role of the market and the government in framing policy. ■ Describe the policy-making process, including:

• Competing concepts of federalism that create the structure within which policy is determined • Opposing interests and their influence on policy outcomes • Policy formation and the policy making • Policy implementation and its ramification for future action ■ Identify different approaches to influence and shape policy and programmatic outcomes that can be used by healthcare advocates. OVERVIEW Nurses and other healthcare professionals must understand how the government, providers, insurers, and consumers interact in the health policy process. This chapter provides an overview of the essential cornerstones that drive the policy-making process and shape the organization and delivery of health care in the United States. By understanding the framework within which policy is made and the politics of policy making and program implementation, all healthcare professionals, regardless of where they perform their duties, will be better prepared to advocate for a healthcare system that best meets the population’s needs. 25 CHAPTER 2 ▸ Introduction The Patient Protection and Affordable Care Act (ACA), also known as “Obamacare,” was signed into law in 2010. Since 2013, the number of Amer - icans without health insurances has dropped from 41  million to a low of 28.5  million, or 10.5% of the population (Kaiser Family Foundation [KFF], 2016). As a result, more people are accessing care, and health outcomes show improvement (Peter - son Center on Health Care and Kaiser Family Foundation [PCHC-KFF], 2017). Also, the rate of healthcare spending has slowed ( McMorrow & Holahan, 2016). Despite these successes, there is a tremendous divide in political opinion about the ACA. President Trump made the repeal of Obamacare a cornerstone of his political agenda.

As the U.S. Senate considered repealing and re - placing the law in July 2017, 50% of adults were favorable, and 44% were unfavorable (KFF, 2017).

How can facts lead to such divergent understand - ing of whether the legislation has been success - ful or not? It suggests significant disagreement in our understanding of the government’s role in helping to shape the organization, delivery, and financing of health care. This chapter explains the purpose of gov - ernment in the policy and policy-making pro - cess as a first step to providing the necessary tools to those who want to influence the organization and delivery of care. The first section of the chap - ter expands on the definition of policy as gov - ernment actions that advance the well-being of society and considers how policy shapes our ex - perience of the healthcare system. When health care works, it is often the result of policies that enable it to succeed. When there is a failure, it can also be the case that policies have created an environment in which it is difficult to operate. The second section of this chapter highlights the different ways government policy and pro - grams intervene in the organization and delivery of health services to assure greater social equity in the access to affordable and high-quality health care. The choice of tools is determined by the balance established between the market and the government in overseeing the organization of healthcare delivery. Although the United States operates under a mixed system, the market and the government each present a different set of opportunities and constraints for policymakers. The remaining sections start with an exam - ination of the changing concepts of federalism or the role of the federal versus state governments.

The federalist framework within which policy is constructed is essential as it determines under whose jurisdiction healthcare policy falls. Once the dynamism of this relation is clarified, the actual programmatic tools the government uses to achieve its goals is explored. The policy-making process is explained in the following section.

The groups that have a stake in the development of public policy and programs are reviewed, as are the issues about which they are most con - cerned. From there, the chapter explains the dif - ferential influence of interest groups and their ability to shape the decision-making process to achieve what they perceive to be more favorable outcomes. This chapter does not explain legisla - tive procedures; that is better left to a civics text.

Rather, this chapter explains the points at which decisions are made and the political dynamics of decision making. The final section brings the discussion back to the nurses and health - care professionals for whom this text is written.

A better understanding of policy helps explain the experiences of those seeking and providing health care. It also provides a framework for un - derstanding how healthcare professionals can be more effective players within the policy-making process and have greater influence as a result.

▸ Policy Defined:

A Framework for Government Action Policy in the broadest sense is the manifestation of ideology or belief systems concerning pub - lic purpose (Weissert & Weissert, 2012). Public purpose refers to actions that benefit the popu - lation as a whole. Public policy, the term used to describe government action, is typically divided 26 Chapter 2 Policy and Politics Explained into three areas: foreign policy, economic policy, and social policy (Lowi & Ginsberg, 1998). The objective of foreign policy is to defend national sovereignty. Economic policy is designed to pro - mote and regulate markets. Foreign and economic policy both seek to promote the political and eco - nomic well-being of American society, but policies in these areas do not have equal impact on all sec - tors of society. Some groups may benefit, whereas others might suffer undue consequences. For ex - ample, the North American Free Trade Agree - ment benefited the overall economy, but many Americans who held manufacturing jobs were laid off as production moved from the United States to countries with lower production costs.

Social policy often becomes the means by which these unintended consequences are addressed.

Through government actions, the provision of the basic necessities—food, shelter, health care, and education—are assured ( Midgley & Livermore, 2008). Social policy, therefore, is redistributive by its very nature. Its goal is to advance social equity. Health policy exists within the larger realm of social policy. Because policy is rooted in social values and ideologies, the discussion of health policy begins with the recognition of the val - ues and ideologies upon which the organization of the healthcare system is based. The historic course of American health policy is best de - scribed regarding shifting beliefs about access to care. Sometimes we stridently pursue health care as a right and look for ways to make ser - vices more readily available. Sometimes we treat health care as a privilege and look to individu - als to take responsibility for their care (Knowles, 1977). These competing values (i.e., a right ver - sus a privilege) are simultaneously and contin - ually at work. The assumed trajectory has been towards redistributive justice, but that is cur - rently under critical scrutiny. Until the Great Depression, ethnic and reli - gious communities assumed primary responsi - bility for providing social and economic support to persons in need of assistance. That responsi - bility shifted to the federal government in the 1930s (Kernell & Jacobson, 2006). The Social Se - curity Act of 1935 included economic support for the elderly, financial and social support for poor children, and limited health care for moth - ers and children. Its goals were further advanced by President Lyndon Johnson’s War on Poverty, whose healthcare initiatives included Medicare and Medicaid. Medicare, which covers practically all Americans older than age 65, was deemed a right. It is a universal entitlement because it makes health services available to a defined population regardless of ability to pay. Such programs tend to be expensive because they are all inclusive, but they also tend to have broad political support because everyone can expect to receive the pro - gram’s benefits (Brown & Sparer, 2003). In con - trast, Medicaid makes health benefits available to distinct groups of low-income persons, which initially included families receiving public assis - tance, the disabled, and some older persons. States determine the specific eligibility cutoff as well as covered services. Medicaid is labeled a selective program because of the limits on eligibility. A re - sult is that it enjoys less political support. First, it serves needy populations whose claim to services is often considered questionable, and second, its level of service can be greater and less expensive than the services received by persons whose in - comes are slightly above the cutoff. Passage of the ACA represented the next ma - jor effort to expand access to affordable health care. It was passed in response to the rising num - ber of uninsured that resulted in part from rap - idly increasing healthcare costs that led to high out-of-pocket costs for individual policies as well as deductibles and coinsurance. The goal of en - suring that all Americans had access to afford - able health insurance is difficult to achieve given differing ideas about rights and privileges. The ACA settled on a plan that combined expanded access to Medicaid and a combination of sub - sidies for individuals up to 200% of the federal poverty level and tax credits for individuals up to 400% of the federal poverty level. Although the ACA made health insurance more afford - able to a large number of individuals, a third of individuals whose family incomes were greater than 200% of poverty reported that health insur - ance remained out of reach financially (Collins, Policy Defined: A Framework for Government Action 27 Marriott entered the senior housing market in response to this demand. This market-based solution, however, is limited to elderly consum - ers with sufficient purchasing power to afford Marriott’s products. For others, a government solution may be needed. Business can also in - fluence consumer healthcare market behavior.

The direct marketing of pharmaceuticals through television, print, and electronic advertising is in - tended to inform and direct consumers towards possible remedies for their health conditions. As these two examples make clear, a fun - damental problem with market-based solutions is their inability to respond when affordability determines what can be purchased. Those who cannot afford essential goods and services must do without. However, what about services that ensure individual welfare, such as lifesaving, but expensive, surgery? In these cases, the market is almost always inadequate. It fails to assure dis - tributive justice because it is premised on the unrealistic assumption that the transaction is an exchange among equals. Such an exchange is not possible in a society with an unequal dis - tribution of income (Arrow, 1963). These are the situations where government intervenes (Stone, 2012). The government’s role is necessitated by this fundamental tension be - tween the economic organization of the produc - tion and the distribution of goods and services and the social value of distributive justice. The market, left alone, tends to pull in the direction of economic inequality, but political beliefs de - mand a counterbalance regarding the distribution of rights and opportunities. The government be - comes the counterbalance for persons who can - not provide for themselves through the market exchange of goods and services (Arrow, 1974).

Through its policies and programs, the govern - ment provides for those who cannot fully par - ticipate in the market. It is this mechanism by which a society seeks to achieve greater equal - ity. Its policies and programs are redistributive, which means that its actions are intended to benefit those who cannot care for themselves or may suffer losses given their inability to pur - chase needed goods and services in the market. Gunja, Doty, & Beutel, 2017). The challenge posed by cutoffs is that the ACA has been nei - ther as successful as those who called for greater government intervention anticipated nor as costly as those who called for no government intervention suggested.

Markets versus Government The premise of direct governmental respon - sibility for the care of dependent populations, settled during The New Deal launched by Presi - dent Franklin D. Roosevelt in 1933, has been re - opened after eight decades. Rather than looking to government to secure social welfare, there is a growing desire in some quarters for govern - ment to retreat from the role of social provider of last resort. This call for smaller government is rationalized by a belief that government re - stricts freedom and the market is capable of meeting individual needs. The terms market and government are shorthand expressions that describe the two ways in which society conducts its business.

Market means reliance on generally voluntary exchanges between private parties. Sometimes these exchanges are mandated and regulated by the government, as in the case of mandatory immunization for school children. Government means reliance on the direct provision of a ser - vice by government employees, as in the case of Veterans Affairs hospitals. It is not uncommon to use a combination of markets and govern - ment, as in the case of Medicare and Medicaid, where the government pays private providers to care for the elderly and poor. Most goods and services, including health care, are acquired through the market. The un - derlying reliance on the market as the arbiter of who gets and who does not get is based on a be - lief that market outcomes best serve individuals and, by extension, enhance the collective good.

Consider the housing market’s response to an aging population’s need for supportive services.

As the number of persons looking for housing alternatives not readily available in single-family or multiunit dwellings grew, companies such as 28 Chapter 2 Policy and Politics Explained brought this contradiction between the states’ re - sponsibility for the public’s welfare and resources of the federal government to provide for the pub - lic’s welfare into sharp focus. States did not have the financial capability to protect the well-being of their citizens because they had limited ability to raise funds through taxation or deficit financ - ing. One result was a shift from a system of dual federalism to a system of cooperative federalism (Kernell & Jacobson, 2006). The federal govern - ment began to play an essential role in creating and funding social programs. Using grants-in- aid programs, Congress appropriated money to state and local governments with the condition that the money be spent for the particular pur - poses defined by Congress. The Maternal and Child Health Service, whose goal was to improve the health of low-income mothers and children, is such a grants-in-aid program. From a policy perspective, cooperative federalism is necessary because Congress set national goals and guided state activity in the realm of social policy. Again, it is this basis on which the current debate about Obamacare is premised (Krugman, 2017).

Federalism The various concepts of responsibility for health policy are also tied to the American federalist system of government (Bovbjerg, Wiener, & Housman, 2003). When the nation was founded, the states ceded certain responsibilities to the fed - eral government but retained others for them - selves. According to the framers of the U.S.

Constitution, the central government has express powers to levy taxes, declare war, and oversee in - terstate commerce. All power not expressly del - egated to the federal government falls under the jurisdiction of the states. Also, within the fed - eral government, there is a separation of pow - ers among the legislative, executive, and judicial branches. This further constrains the power of the national government by dividing the gov - ernment against itself. Finally, the Constitution limits both the federal and state governments by protecting individual rights that cannot be de - nied except through extraordinary procedures. Federalism refers to this dual system of state and federal governance, which limits the juris - diction of the federal government. This system provides the context in which the patchwork pattern of health policy exists. Although there is a strong national government, the states were initially more important than the federal gov - ernment in virtually all policies governing the lives of Americans, such as economic regulation, public health, and education. When President Franklin Pierce vetoed a law setting aside millions of acres of federal land to benefit the mentally ill, he reasoned that mental health was a state, not a federal, responsibility (Rothman, 1971). Despite individual welfare being defined as a state responsibility, there has been a constant expansion of federal power in this area since the Civil War. While the Constitution gave responsi - bility for individual welfare to the states, the Con - stitution gave the federal government authority to raise taxes for common defense and general wel - fare. The dire need caused by the Great Depression Courtesy of the Library of Congress, Prints & Photographs Division, preproduction number ppmsca 09733. Policy Defined: A Framework for Government Action 29 similar needs being passed at the federal, state, and local levels. Examples of such service gaps and duplication are easily recognized by those who serve older persons. An individual seek - ing long-term care is confronted with myriad programs, including Medicare and Medicaid as well as social service block grants developed un - der both the Social Security Act and the Older Americans Act, and state-initiated programs. In - dividuals must navigate this maze of programs to determine their eligibility for services, while providers must integrate the various funding streams to provide coordinated and compre - hensive services where alignment does not nec - essarily exist. Fragmentation also impacts the ability to create a program of national health insur - ance. Given the dual regulatory system gov - erning health insurance, neither the states nor the federal government could easily mandate employers to offer health benefits because nei - ther governing body has regulatory authority over all businesses in a particular area (Mari - ner, 1996). The ACA amended the federal law to require employers of 50 or more persons to provide health insurance or pay the penalty. The ACA also mandated individuals not covered by the employer mandate to purchase health in - surance. The U.S. Supreme Court upheld the constitutionality of the individual mandate in June 2012 as well as the penalty under the fed - eral government’s power to collect taxes (Jost, 2012). However, the Internal Revenue Service (IRS), in response to the Trump administration’s effort to reduce the burden of the ACA, is not enforcing collection of the individual penalty.

This revenue is used to support the Medicaid expansion and is essential to the financial via - bility of the ACA (Pear, 2017). The loss of rev - enue will further fragment access to services.

Governmental Intervention The government has several tools at its disposal to intervene when the market cannot adequately address a problem (Stone, 2012). Among these are taxation, service provision, and regulation. The federal government assumed an even larger role regarding shaping and funding so - cial welfare programs starting in the 1960s. The expansion of federal authority was in part a re - sponse to civil rights advocates who demanded greater regulation of state implementation of federal programs to achieve racial and social equality. The administration used the regula - tory process to impose national standards on the states (Conlan, 2006). In addition, the federal government created categorical programs that funded community-based providers, bypassing state governments (Davis & Schoen, 1978). The Office of Economic Opportunity’s community health center program is an example of such a categorically funded program. In the late 20th century there was one more shift in the relationship between the federal gov - ernment and the states. Starting with President Nixon, and affirmed during Reagan’s presidency, the push was to return authority to the states.

Initially called the new federalism , it involves the devolution of authority to the states to define the parameters of federally funded social welfare programs (Anton, 1997). The expressed goal is to enable states to accommodate their unique needs better. This is not possible when the fed - eral government is perceived as imposing a one- size-fits-all approach to social programs. Block grants became the mechanism by which greater discretion was given to the states to shape so - cial welfare programs. The block grants essen - tially combine funding from several grant-in-aid programs and allow states to determine how the money will be spent to achieve broad program - matic goals. While early in the Trump presi - dency, the intent is to both shift power back to the states and make government smaller. The varied proposals for replacing the ACA are all premised on massive federal cuts that involve the elimination of the Medicaid expansion, and the devolution of authority to the states to ad - dress the health needs of its citizens. Federalism results in a fragmented system of governance (Steinmo & Watts, 1995). One consequence is the fragmentation and dupli - cation of services arising from laws addressing 30 Chapter 2 Policy and Politics Explained with nonteaching hospitals given the additional costs incurred for resident and faculty salaries and the additional resources used for patients seen by residents. As a result, Medicare funds residents’ salaries, thus subsidizing the hospitals where they train (Institute of Medicine, 2014).

Another example is the orphan drug program.

The government subsidizes pharmaceutical com - panies to research drugs that are used by a small number of persons and are therefore not prof - itable to develop and produce. Through these types of programs, the government encourages program expansion in areas that are not other - wise profitable (McCaughan, 2017). A third programmatic tool is government regulation of the market. Regulations are legal restrictions aimed to produce outcomes that otherwise might not occur. Examples of regu - lation include the licensure of physicians and other healthcare professionals (Grumbach, 2002). These regulations were adopted in the early 20th century as a way to protect the public from unqualified practitioners. Through a series of educational and practice requirements and a series of examinations, states determine who can and cannot provide medical and healthcare services. Another example of government regu - lation is state-mandated nursing-to-patient ra - tios for hospital-based care (Conway, Konetzka, Zhu, Volpp, & Sochal, 2008). These regulations are designed to protect patients by maintaining minimum staffing levels at all times.

▸ The Policy-Making Process The policy process is often described in rational terms as a step-by-step series of decisions and actions that lead to a reasonable outcome. The process begins with agenda setting and contin - ues through policy formulation and adoption, policy implementation, evaluation, and reevalu - ation (Kingdon, 1995). While the process can be broken down into a number of discrete events, the complexity or variance of what occurs is Taxation is often considered the means by which government raises money to support its spend - ing and influence behavior. Many states tax the sale of cigarettes to influence cigarette use (DeCicca, Kenkel, Mathios, Shin, & Lim, 2008).

Higher cigarette taxes have resulted in lower rates of consumption. Medicare Part A, which covers hospital care, is financed by payroll taxes paid by employers and employees. The ACA is funded through multiple sources of taxation, in - cluding the extension of the Medicare payroll tax on high earners and a tax on unearned in - come from taxable interests and dividends, for example. Current bills to repeal the ACA are es - timated to result in tax cuts of over $50,000 to persons earning more than $1  million dollars (Huang & Van De Water, 2017). Another tool is government support of ser - vice provision. In some cases, the government is the actual provider of services. Public hospitals were locally financed institutions organized to serve persons who cannot afford care. The Vet - erans Health Administration is a comprehensive healthcare system supported by the federal gov - ernment for individuals with medical problems resulting from service-related injuries after dis - charge from the service. Alternatively, the gov - ernment can purchase services from the private sector. Medicaid is an example of such a program.

Medicaid enrollees seek services from approved providers whose bills are paid by a combination of state and federal funds. Such spending is de - signed to increase access to the market for per - sons with limited income. The government can also produce and purchase services. This is the case with biomedical research. The National Institutes of Health (NIH) has a large biomed - ical research complex that supports numerous researchers. Also, the NIH funds independent researchers at universities and research labora - tories across the country. The purchase of services may also take an indirect form whereby the government subsi - dizes sellers to participate in markets that might not be competitive based on price. For example, medical education is extremely costly. Hospitals that train physicians cannot compete on price The Policy-Making Process 31 these interests are organized, their policy per - spective, and the influence they wield in shaping what policy is adopted at any particular point in time. In the following section, the primary stakeholders or interest groups in the healthcare arena are identified as well as the changing power of these groups to influence policy outcomes. The American public’s health and well-being is the focus of health policy, but Americans do not speak with a single voice. There is tre - mendous variation in health status by age, socioeconomic status, and racial and ethnic background. As a result, many different organi - zations advocate on the public’s behalf. In each case, they are concerned with enabling the pop - ulation groups they represent to access services that would improve the quality of their lives, including a greater voice in the decisions that affect their health (Schneider, 1998). They want to become active participants in their care. Some organizations support better treatment modali - ties and financing for discrete services, such as the American Cancer Association, the Ameri - can Lung Association, and the National Mental Health Association. Others represent the needs of population-based groups. The largest groups active in policy making represent women, older persons, the disabled, the poor, and racial and ethnic minorities. Typically, the public’s first point of contact with the healthcare system is when they seek services. The organization and delivery of ser - vices can broadly be categorized in terms of two groups: clinicians and the organizations where they work. Their interests lie with the nature of services provided and how well or poorly they are organized and delivered. On the provider side, one can speak about physicians, nurses, and other practitioners and technicians. On the in - stitutional side, there are hospitals and nursing homes, and community-based providers such as community health centers. These groups do not speak with a single policy voice as their per - spectives differ. Historically, the technical expertise of physi - cians justified their control over the organization essential to understand that it may be possible to rationally explain how decisions were made at any point of the cycle, but not their content.

There may be agreement as to the problem. For example, the problems in the healthcare system are generally described regarding the number of uninsured individuals, the high cost of health care that limits access, or the uneven quality of care. However, the agreement stops there. The attribution of causation and the presentation of solutions reflect the diversity of ideas held by the multiple stakeholders; each is attempting to de - fine the problem and desired outcomes based on what they deem as “best.” This means there is no objective best an - swer. There is typically a range of competing best answers depending on the perspective from which one views the problem. “Best” is thus an important but always-loaded term be - cause the process is a political one. At each twist and turn in the policy processes, best is deter - mined by the stakeholders that hold the great - est sway over the decisions that will be made.

The government’s role typically becomes one of mediation between these interests as it formu - lates, creates, and implements policies and pro - grams that aim to achieve broader social goals.

Interest Groups in the Health Field The healthcare field is composed of many play - ers, both inside and outside government. Be - cause health and health care are fundamental to our well-being, it is a sphere of activity in which everyone has a vested interest. While it is possible to speak about the public’s interest, interest groups typically refer to people and or - ganizations with the most immediate stake in a problem and its resolution (Stone, 2012). These groups are known and identifiable. They repre - sent multiple interests, and each one is trying to influence the direction of government pol - icy. The challenge for someone interested in the policy-making process is to understand how 32 Chapter 2 Policy and Politics Explained The business community, for example, is the prime purchaser of health care. They are in - terested in controlling what they spend on employee health benefits while providing a package of service that meets employees’ needs.

There is a plethora of organizations that rep - resent business interests, including the U.S.

Chamber of Commerce, which advocates on behalf of small businesses. The business sec - tor typically works in conjunction with insur - ance companies that are represented by the Health Insurance Association of America. The federal and state governments are also major purchasers of services. The U.S. Department of Health and Human Services (HHS) admin - isters federal health programs. The National Governors Association represents the inter - ests of state governments. The role of the medical supply industry in health policy decisions is expanding as tech - nology plays a greater role in the provision of health care and comprises a growing percent - age of healthcare spending. The pharmaceutical industry, which is represented by the Pharma - ceutical Research and Manufacturers of Amer - ica (PhRMA), is the fastest growing part of this sector. The American healthcare system is known for its technological know-how and the interests of these companies, represented by Advanced Medical Technology Association, must also be taken into account. Closely aligned with provider groups are knowledge producers who advance the science that underpins medical care and its organiza - tion and financing and establishes and maintains standards for medical practice. This includes universities and biomedical research organiza - tions. There are also think tanks that produce and disseminate healthcare research, such as the Institute of Medicine, the Kaiser Family Foun - dation, and the Commonwealth Fund. Last are organizations like the American Association of Medical Colleges and The Joint Commission that work to maintain the standards of med - ical practice through accreditation, examina - tions, and licensing. and delivery of medical services (Freidson, 1970; Starr, 1982). Their authority extended to state-supported control over the healthcare field.

Physicians determined the regulation of medi - cine through state licensing procedures. Physi - cians as a group are represented by the American Medical Association (AMA). The power of the AMA was legendary, but also circumspect. Phy - sicians actively advocated against programs, such as national health insurance, because they feared it would enable the government to reg - ulate the provision of health services and the physician–patient relationship. The AMA’s in - terest typically remains at the broadest level as they avoid specific policy issues when the ben - efit of their members can be at odds. As a result, the different medical specialties are represented by their organizations. The nursing profession’s interests diverge from those of physicians because they focus more on the process of care as opposed to cure (Glouberman & Mintzberg, 2001). However, like physicians, nurses are represented by multiple organizations, including the American Nurses Association, American Association of Colleges of Nursing, the National League for Nurses, and the Association of Nurse Executives. They often work jointly when addressing issues surround - ing health, health care, and nursing practice, but take independent positions on specific issues such as unionization. The same holds true for institutional providers. On the provider side, the American Hospital Association is the primary advocacy group for the hospital industry, but voluntary, public, and for- profit hospitals each have their own associations, as do academic health centers. Their interests are often focused on how the financing of care can be structured to assure access for the populations they serve. Critical to the system are organizations that pay for health services. Each of these groups has a concern for the well-being of the popu - lation, but each one also has a stake in devel - oping financing and reimbursement methods that are responsive to their particular concerns. The Policy-Making Process 33 Democratic majority in the House and the Sen - ate that could assure passage of the ACA with or without partisan support. A similar scenario unfolded concerning repeal. Trump’s campaign to “make America great again” was directed at people who had not benefited from the eco - nomic recovery following the recession of 2008.

For many middle-income persons, the ACA re - sulted in higher health costs as a result of rising premiums and deductibles, or their decision to pay the penalty under the individual mandate.

With Republicans in control of both Congress and Senate, the executive branch assumed that repeal and replace would not be difficult to achieve. But the consensus on how to proceed was not there (Shabad, 2017).

Identifying the Direction of Policy Change Once a policy issue and its political framing become part of the public agenda, the relevant question becomes which alternative will have the greatest chance of succeeding. Typically, it is argued that the ideas and programs of inter - est groups with the greatest access to policymak - ers have the greatest chance of success, while others struggle to be heard (Schnattschneider, 1960; Bachrach & Baratz, 1962). However, the changing parameters of healthcare reform, as supported by the Obama and Trump administra - tions, demonstrate that the influence of health - care interest groups is not equal or fixed. Power can become realigned over time, as can the im - portance of different stakeholders. The changing balance of power must be seen as part of the ongoing nature of the policy process. There is rarely a situation where poli - cymakers start with a clean slate. Rather, they are responding to the conditions resulting from existing policy and programs (Weible, 2018).

Sometimes policy implementation achieves its goals and furthers social equity, but at times there can be unintended consequences that worsen the outcomes for many people. It is this ten - sion over who benefits and who is left behind Politics of Decision Making In most cases, the social problems addressed by the government have been known and part of the national dialogue for many years. The gov - ernment, however, does not assume an activist stance on all issues at all times. As a result, there are periods of relative stasis when the govern - ment is not called upon to play a highly inter - ventionist role. Rather, it makes incremental changes to improve upon existing policy or ad - vance programs that are limited in scope and whose impacts are understood (Baumgartner, Jones, & Mortensen, 2018). However, the situ - ation can change, and there can be a window of opportunity that brings an issue to the forefront ( Herweg, Zahariadis, & Zohlnhofer, 2018). This can result in large-scale departures from the past. There are different types of events that ele - vate an issue at a particular point in time (Peter - son, 1993). The government is often responsive to the external environment such as a natural disaster like Hurricane Katrina or, more re - cently, Hurricane Harvey. Many public health issues that had been ignored before the hurri - cane, such as emergency preparedness, were sud - denly perceived as needing immediate action (Fee & Brown, 2002). Interest groups also have the tools to advance their agendas. The series of lawsuits brought against tobacco companies in the 1990s, which led them to seek liability pro - tection in exchange for greater regulation, is an example of the use of the legal system (Pertschuk, 2001). Presidents can also advance a policy is - sue. Most recently, Presidents Clinton, Obama, and now Trump have made healthcare reform one of the central issues of their presidencies.

This overarching concern has dominated health policy making. These triggering events and their ability to shape the political agenda and policy options are heavily influenced by politics of the time (Kingdon, 1995). Obama’s campaign in 2008 was framed by the ideas of hope and change.

Given the crash of the financial markets, peo - ple were looking for some assurances about the economic well-being of the country. There was a 34 Chapter 2 Policy and Politics Explained who benefited greatly from the expansion of health services were not looked to for the solution. Their medical expertise regarding the organization and delivery of care did not carry the same weight as the managerial expertise of systems administra - tors, including third-party payers who under - stood healthcare financing. These groups were in a better position to control costs by creating financial incentives to influence physician prac - tice patterns (Weissert & Weissert, 2012). The government took the lead in controlling hospi - tal costs when it changed Medicare reimburse - ment and incentivized the growth of managed care. This resulted in the consolidation of health providers under the control of hospitals and large multispecialty group practices and, ultimately, a rebalancing of power between physicians and in - stitutional providers and payers of care in deter - mining how health care would be organized and delivered (Relman, 1980; Starr, 2017). Like Medicare and Medicaid, the ACA can be understood as both an extension and disruption of existing policies and programs. By the time the ACA was passed, the number of uninsured was approaching one-fifth of the population (KFF, 2016). In addition, healthcare spending contin - ued to rise and accounted for over 17% of GDP.

The goal of the ACA was to expand access and contain costs. The ACA used private insurance markets to make individual health insurance more widely available by providing subsidies or tax credits to persons with incomes between 138% and 400% of poverty. The fundamental change was the Medicaid expansion. Under the ACA, Medicaid was reconceived as a universal insur - ance program for all people with incomes below 138% of poverty (Nardin, Zallman, McCormick, Woolhandler, & Himmelstein, 2013). Although the Supreme Court made the expansion optional, at this time, over 20% of the population is insured by Medicaid (KFF, 2017). The Republican effort to repeal the ACA is aimed at returning the organization, delivery, and financing of health care to the market (Jost, 2017). Rather than looking to government to provide a public benefit, the Republican bills to repeal and replace the ACA use a system of tax that sets up the political conditions for change and the ability of different actors to influence the situation. The passage of Medicare and Medicaid in 1965 marked the first time the federal gov - ernment provided health insurance for anyone other than federal employees and the military.

The legislation garnered widespread support be - cause it was responsive to the dominant health - care interest groups. The hospitals backed Part A because charges would be determined retro - spectively based on actual costs, and they would receive reimbursement for persons who previ - ously had trouble paying for hospital care. Phy - sicians and the AMA, as well as the Republicans, supported Part B because it was voluntary and did not undermine the doctor–patient relation - ship by creating a broader precedent for the gov - ernment provision of care. Insurance companies supported Medicare because they would be re - sponsible for claims administration. For Demo - crats, Medicare was a social insurance program that set a precedent for government-provided universal coverage (Marmor, 1973). These pro - grams were built around the interests of the most influential stakeholders, but they also broke new ground in making health care more widely af - fordable and, therefore, accessible. What was unforeseen at the time Medicare and Medicaid were passed was that the imple - mentation of these programs would shift the balance of power away from physicians and to - wards institutions whose interests centered on the financing of health care (Morone, 1995). Fol - lowing implementation of Medicare and Med - icaid, healthcare costs began to rapidly increase due to expanded access to medical care and the ways payments were calculated. Healthcare ex - penditures almost doubled from 5.6% of the gross domestic product (GDP) in 1965 when the legislation was passed to 10.1% by 1983 when the government implemented a revised hospi - tal payment system from one based on actual costs to one based on fixed costs (Centers for Medicare & Medicaid Services, 2016). The policy issue was recast from one of ac - cess to one of cost containment. Physician groups The Policy-Making Process 35 already been negotiated among all of the inter - ested stakeholders during the process of policy formation. These negotiations continue right up until the moment that the proposed legislation comes under review by Congress and is written into law (Weissert & Weissert, 2012). Govern - ment seeks to advance broader social interests while being responsive to vested power in the healthcare industry that demands concessions in the programs being advanced. Medicare created a managed care pro - gram, Part C, that is controlled by managed care companies to exist alongside traditional Medicare that is controlled by the health pro - viders. Until recently, Part C costs exceeded those of traditional Medicare, but the govern - ment subsidized the difference (Biles, Casillas, & Guterman, 2016). Likewise, Medicare Part D, the Prescription Drug Plan, does not allow the government to use its buying power to negoti - ate pharmaceutical prices. Passage of the ACA also required the support of powerful interest groups, such as the hospital sector, insurance in - dustry, and small businesses. Despite opposition, President Obama moved ahead in a relatively expeditious way. Their support was obtained by making concessions to large stakeholders.

The most significant was the elimination of the government-sponsored health insurance option (Oberlander, 2010). Legislation provides the broadest possible outline of a program. The specificity of the law determines the flexibility that the administration has in its implementation (Lowi, 1979). There are advantages and disadvantages to both choices.

A bill in which the details are clearly specified may encounter difficulty in Congress because groups may oppose the particulars and disre - gard the overarching goals, which was the case in Clinton’s health reform. A consensus can be more easily built around a law with broad goals and few details (Stone, 2012). In that case, deci - sions about implementation are left to the ad - ministering agencies. How an agency chooses to implement the program can have a tremendous influence on its  outcome (Jacobson & Wasserman, 1999; credits to ensure the affordability of health in - surance. Rather than requiring insurers to pro - vide a basic package of federally defined essential benefits, insurers can offer minimal coverage at lower costs. Rather than mandating that individ - uals have basic health coverage, Republicans as - sume that individuals can anticipate the levels of health insurance that would best meet their needs.

However, lower costs shift the financial risks and health outcome risks on to patients. This takes us back over four decades. As Kenneth Arrow (1974) pointed out in the early 1970s, the market does not work when there is an unequal distribution of income and the market goods are costly and essential to individual well-being. Health care now accounts for almost one-fifth of the economy (18% of GDP). Given that sizable portion of the economy, major institutional play - ers actively protect their positions when it comes to health policy. This can be seen in the amount of money being spent to influence legislators (OpenSecrets.org, n.d.). In 2016, the pharma - ceutical and health product industry spent over one-quarter of a billion dollars ($248,733,749) on lobbying. This was the most of any industry in the country. Pharmaceuticals were followed by insurance companies, which spent almost $153 billion. In eighth place was the hospital and nurs - ing home industry, whose combined spending was just under $100 million. The healthcare in - dustry also donated almost $200 million to par - ties and candidates in the 2015 to 2016 election cycle—51% to Democrats and 48% to Repub - licans. These industry groups would not spend such large sums if they were not looking to in - fluence impending health policy decisions in directions that furthered their economic inter - ests but were aligned with the underlying goals of access, cost, and quality.

Policy Adoption and Implementation Policy is enacted through the legislative process.

Elected officials decide the broad outlines of pol - icy when they enact laws, but they do not act in a vacuum. They act upon proposals that have 36 Chapter 2 Policy and Politics Explained rise as much as 25%, most Republicans sup - ported repeal of the ACA. They considered the market for health care so distorted by govern - ment programs that repeal was the only way to wipe the slate clean and begin again (Ponnuru & Levin, 2013). Whether one agrees or not with the Republican “wipe the slate clean” policy ap - proach, it is up against a powerful real-world coalition of vested interests that are at best in - clined towards incremental change in an oth - erwise working system.

▸ What Is at Stake for Nurses and Other Health Professionals? Healthcare professionals and their patients ex - perience the impact of the implementation pro - cess on a daily basis. How patients are recruited to programs such as state insurance exchanges is determined by the regulations of these pro - grams. Which companies offer health plans, and the scope of these plans under the exchanges, are the result of program guidelines and the payment rates for physicians participating in accountable care organizations (ACOs). These are examples of how policy developed by federal or state legislatures and implemented by federal and state administering agencies are realized in the ways health care is provided and adminis - tered. Although their work is seemingly distant, their impact is immediate regarding access to quality, cost effective care. The work of nurses and other health pro - fessionals tends to be highly individualized. By interacting with patients, these individuals see the many problems that result from policy deci - sions made at a distance. They understand how physicians’ orientation toward care can overrule nurses’ orientation toward care (Glouberman & Mintzberg, 2001). They observe how the loss of healthcare insurance can result in patients de - ferring care, much to their detriment. They un - derstand that the pursuit of quality patient care Morone, 1995; Pressman & Wildavsky, 1973).

The leadership of the agency must be in accord with the program’s goals so it does not languish, and the personnel must have program expertise to implement it effectively (Peterson, 1993). Or - ganized interests that were instrumental through - out the legislative process play a comparable role during its implementation. They work with the administrative agencies to ensure that the appli - cation meets their interests by monitoring the process (Pressman & Wildavsky, 1973). The Obama administration nominated Don - ald Berwick to serve as Director of the Centers for Medicare and Medicaid Services. He had played a significant role in the development of the ACA. The Trump administration appointed Tom Price as Secretary of HHS. A fierce oppo - nent of the ACA, his administration has begun to weaken enforcement of the individual mandate, impose work requirements on Medicaid recipi - ents, and limit outreach to the uninsured during open enrollment (Park & Sanger-Katz, 2017). Programs do not always achieve their stated goals. There are unintended consequences that result from any legislative act. The cyclical na - ture of the policy process becomes apparent.

The proposed solutions in one period set up the problems that need be addressed in the next.

One result of bringing all interested parties into the ACA is that the most recent (2017) efforts to repeal were not successful. Although there is widespread dissatisfaction with the ACA, the Republicans misread its meaning. The public was disappointed that the ACA had not con - trolled the cost of health care as promised. How - ever, they did not support repeal. They wanted Congress to address the unintended cost con - sequences of the ACA so the legislation would realize the level of protection it had promised (Jacobs & Mettler, 2017). Also, there was a no - ticeable absence of support from all interest groups (Leonhardt, 2017). Despite the noticeable lack of support, the Congressional Budget Office’s estimates that as many as 14 million persons might lose health in - surance in 2018, and estimates from the insur - ance industry that individual premiums could What Is at Stake for Nurses and Other Health Professionals? 37 expertise (Wynia, Kohorn, & Mitchell, 2012).

Nurses and other health professionals who took instruction from doctors for matters related to direct patient care are being recognized for their expertise. They have become strong advocates for interprofessional education and have even begun to seek professional status and the right to independent practice. Professional associations, such as those for physical therapists and nurse practitioners, are lobbying on a state-by-state basis to change licensing laws so these clinicians can practice independently and receive direct reimbursement for their services. Such laws recognize the shifting base of power within the health field through the creation of alternative centers of authority. By understanding the process and how it has shaped the organization and delivery of health care, it is possible to understand the terms of engagement. Since the 1990s, the market was assumed to bring greater efficiency to the or - ganization and delivery of health care. It is the failure of this approach that reinvigorates inter - est in its politics. We know that the problems of health costs, access, and quality have not been fully resolved. The critical challenge remains one of determining how health care should be organized and delivered to ensure the best pos - sible health outcomes for the population. De - termining what will be the trade-offs between access, costs, and quality will impact the situa - tion that nurses and other professionals confront every day. Nurses and other healthcare providers need to become one of the dominant voices in the policy-making and policy- implementation process for how the healthcare system will best meet the needs of the people it serves.

Discussion Questions 1. What are the limits of the market in the provision of health services? 2. Why does the federalist system of gov - ernment result in the fragmentation of healthcare delivery? 3. What makes policy alternatives political in nature? is dependent on their ability to engage and use nursing resources effectively, which will likely become more challenging as the nursing short - age persists and resources become increasingly limited (Rother & Lavizzo-Mourey, 2009).

© Samuel Perry/Shutterstock In many cases, these professionals become the patients’ advocates, but historically they have not played a major role in the initial develop - ment of the policies that have such a tremendous impact on their work and the lives of their patients.

Some have attributed this to heavy workloads.

Others have discussed the educational process that socializes nurses to distance themselves from politics. Still others speak about the difficulty nurses have had in asserting their professional authority when they find themselves up against dominant interests, such as physician groups, hospitals, and payers. Regardless of the cause, nurses and other health professionals are assert - ing a greater voice in the policy-making process (Clarke, Swider, & Bigley, 2013; Needleman & Hassmiller, 2009). Nurses and other health professionals are finding themselves with greater authority and are leading several policy-related discussions.

The healthcare labor force, which has been de - scribed as a pyramid with physicians at the apex directing all related medical practice, is chang - ing. As the provision of care becomes increas - ingly complex, team-based care is taking hold.

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Los Angeles, CA: Sage Press. Morone, J. (1995). Elusive community: Democracy, deliberation, and the reconstruction of health policy. In M. Landy & M. Levin (Eds.). The new politics of public policy (pp. 180–204). Baltimore, MD: Johns Hopkins University Press. Nardin, R., Zallman, L., McCormick, D., Woolhandler, S., & Himmelstein, D. (2013). The uninsured after implemen-tation of the Affordable Care Act: A demographic and geographic analysis. Health Affairs Blog. Retrieved from http://healthaffairs.org/blog/2013/06/06/the-uninsured 40 Chapter 2 Policy and Politics Explained Weible, C. M. (2017). Introduction: The scope and focus of policy process research and theory. In C. M. Weible & P. A. Sabatier (Eds.), Theories of the policy process (4th ed., pp. 1–13). New York, NY: Westview Press. Weissert, W. G., & Weissert, C. S. (2012). Governing health: The politics of health policy (4th ed.). Baltimore, MD: Johns Hopkins University Press. Wynia, M. K., Kohorn, I. V., & Mitchell, P. H. 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Norton & Company. 41 References © Anthony Krikorian/Shutterstock A Policy Toolkit for Healthcare Providers and Activists Roby Robertson and Donna Middaugh OBJECTIVES ■ Define the role of healthcare professionals in policy advocacy and politics. ■ Describe processes for becoming a policy advocate within one’s own organization, profession, and community. ■ Recognize the difference between expertise and internal and external advocacy in relation to stakeholders. ■ Describe benefits of using an interdisciplinary collaborative approach in policy advocacy. ■ Apply the concepts of health policy to case study vignettes. ■ Develop one’s own toolkit for becoming a health policy advocate. OVERVIEW What is the role of healthcare professionals in the political process? Given the range of issues, where does the political process begin and end? Healthcare policy is centered around the notion that all healthcare providers require a fundamental understanding of the healthcare system that is not limited to the knowledge required to practice their discipline. No longer can healthcare professionals be prepared solely for clinical practice. They must ready themselves to deal with the economic, political, and policy dimensions of health care because the services they provide are the outcome of these dynamics. 43 CHAPTER 3 ▸ Introduction Professional nurses and other allied health prac - titioners must have a seat at the policy table, but they must also understand the perspectives of their colleagues; therefore, we have used contrib - utors from outside of nursing, including allied health professionals, activists, politicians, econ - omists, and policy analysts who understand the forces of health care in the United States. The rationale behind an interdisciplinary approach is that no one person has the right solution to the challenges confronting health care in the U.S. These challenges include high costs, lim - ited access, medical errors, variable quality, ad - ministrative inefficiencies, and a lack of care coordination. It is not surprising that the healthcare sys - tem is under serious stress and that a host of ac - tors, both within and beyond the system, have myriad solutions to the problem. This chapter offers current and future healthcare practitioners who are committed to reducing health dispar - ities and achieving healthcare equality insight into how clinical practice is derived from reg - ulations and laws that are based on public pol - icy and politics. It is important to note that politics is both necessary and critical to making changes, whether we are discussing system-level reforms (e.g., na - tional health insurance reform) or a local hospi - tal improving health data access (e.g., electronic medical records). This chapter provides healthcare practi - tioners a toolkit, or a working model, of how to “do” policy advocacy within and beyond our organizational lines. The toolkit is based on the ability to answers these questions: What is the health professional’s role in policy advocacy and politics? How is that role changing in the midst of organizational evolution where strict bureau - cratic control is being replaced with more flex - ible models of collaborative decision making across public, private, and nonprofit arenas? In addition, this chapter examines two broad components of policy change: the influence and power of stakeholders or constituencies, and the power of expertise. Although these arenas over - lap, here we examine them separately to portray their specific roles more accurately. What, then, is the healthcare practitioner’s role in the political process? Where does that process take place? In this chapter we examine the dynamics of the process. Many traditional views define the political process as external only, primarily defined at the policy-making levels of government or boards and commis - sions; therefore, the argument follows that pro - fessionals below senior-level decision makers are primarily reactive—that is, they respond to proposals from up the line and must calculate how to implement changes that others have im - posed on them. In public administration this has tradition - ally been defined as a politics/administration di - chotomy; that is, political decisions are made by higher ups, and the administrator finds a way to carry out those decisions. That dichotomy, however, is not reflective of reality because in actual decision making and in the practicali - ties of day-to-day management, policy shaping and implementation within a given organiza - tion are the result of interactions at all levels of the organization. The administrators are trying to influence policy outcomes, like those in the policy arena. It is time that healthcare practi - tioners do the same. There is another reason why practitioners must develop a political/policy toolkit. Politics and policy making are not a function only of the external environment of the organization.

In fact, the most sophisticated and nuanced el - ements of such a policy/political role can also be found in the internal environment of the or - ganization. Again, practitioners can play a role in influencing these outcomes. Imagine the following scenario: Your se - nior executive pulls you aside one day and says, “Do you know that proposal you’ve wanted to push forward about how we reallocate the staff here in the organization? Well, why don’t you put together the budget, a time line, and what we need to do to move this forward in the next budget cycle?” You have been anxious to do so 44 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists for some time, and you stay in the office every evening detailing the proposal (with fancy pie charts, a time line, personnel requirements, etc.), and you turn it in to your executive. A week goes by, and then two, then three. You are getting anxious; to start some of the time line issues you would need to get rolling soon, but you’ve heard nothing. You mention it to the executive and she nods, looks solemn, and asks you back into the office. She sits on the edge of the desk (not behind the desk, not a good sign) and pulls out your proposal. You can see it has lots of red marks throughout. The executive shakes her head and says, “Well it re - ally is a great idea; it really is the way to go in the future, but I ran it up the line, and well, you know, politics got in the way. It’s just not going to fly!” She hands back your proposal. You re - turn to your office and open the file cabinet of other projects that didn’t get off the ground, and you think, politics! Why didn’t it fly? What could have hap - pened? Senior managers did not like the pro - posal? It competed with other proposed changes that could fly. What kept yours from flying? Per - haps it was because you had not accounted for the politics of your own organization. Politics exist at the organizational level, not just at the policy-making level, and you did not take those considerations into account. Thus, our approach in this chapter suggests that the politics of the environment are both external and internal. In all areas of leadership and management, within the healthcare policy arena and beyond, the shift to managing in a more collaborative arena (vs. a more bureaucratic one) also re - quires particular attention to utilizing political tools to operate effectively. Instead of perceiv - ing “politics” as a control function (zero sum winning and losing), the effective leader in the policy advocacy world must see the political environment as an ongoing process shaped by short-term collaborative relationships, which may exist for temporary networks and dissolve as the process continues to evolve. In nursing leadership and administration, much of the theoretical and conceptual research refers to such models as shared governance mod - els. As early as 1988, research focused on how to better integrate such efforts into effective practice (Allen, Calkin, & Peterson, 1988). Yet, even as late as 2004, a careful review of the lit - erature of shared governance had yielded con - siderable anecdotal support for its importance, but not much empirical evidence of its effec - tiveness (Anthony, 2004). The reality is that more and more manage - ment functions in health care require greater assimilation of collaborative models to the ef - fective practice of administration. We suggest that the key to gaining more effective use of the policy environment, both inside and outside the organization, is to understand more effectively the power that one has to effect change. Unlike many analyses of power that are often based on the individual, our approach is to exam - ine the organizational power that exists for the practitioner/advocate. We examine that power through two broad lenses: the power of stake - holder relationships and the power of expertise. FIGURE 3-1 is a simple heuristic about power. This pyramid has been widely used in political science and policy fields for years. Power can be seen in the levels of the pyramid, with the nar - rowest (and thus the weakest) type of power at the top of the pyramid. It becomes broader with more effective types of power. Force we all un - derstand. The power to make others do things is obvious, from the actual use of force (includ - ing weapons) through the more common use of force in an organization, which is the power of the organization to enforce rules, standards, and practices. Influence is more nuanced, but its role is also obvious. Does the organization have the capacity to convince others that they should support or acquiesce to the organiza - tion’s decision? There are many reasons an or - ganization may be able to influence a decision.

Possibly the organization has shown the capac - ity to be successful; maybe the organization has demonstrated knowledge or connections to ac - complish the required tasks. Nevertheless, the organization must convince others that its de - cisions are good. Finally, the broadest and most Introduction 45 Here we summarize two broad elements that un - dergird the organization’s power: stakeholders and expertise. We are going to distinguish be - tween internal and external power (power within the organization and beyond) (see FIGURE 3-2). ▸ Stakeholder Power For many in the healthcare arena, stakeholder power is the most obvious political tool. A simple “who do you know, who is on our side” model of developing policy change is obvious.

Too often, however, our approach is to simply add up the influential players on our side and the other side. The stakeholder list becomes a roster of names rather than the nature of power relationships. If it is just a matter of numbers, any policy that is supported by a greater number of individuals or organizations should prevail.

Under those conditions, we would suggest that a national health system that is effective for the poor would be the easiest to pass, but we know that organizations representing low- income groups have less influence than those repre - senting high-income groups. It therefore can - not be just numbers! FIGURE 3-1 The power pyramid Force Inf luence A uthor ity FIGURE 3-2 Focus and locus of organizational power IS Internal Ext ernal LOCUS Exper tise Stak eholder s FOCUS IE ES EE critical part of the pyramid is authority. At the core of a lot of political theory is authority— the acceptance of the organization to decide and the acceptance by others of its decisions without serious question. Expertise is one form of author - ity. It is clear that in some situations the exper - tise of the organization, its professionals, and/ or the policy implementation of that expertise is simply accepted—but that is not always true! One example of how all three elements of the power triangle work is when you are driv - ing your car late at night and you stop at a red light with nobody around. There you sit because a light bulb with a red cover is on. Now, that is power! Do you recognize why you stopped? Did you have to be convinced? (Maybe you think for a second that lights regulate traffic, but it is the middle of the night and there are no cars around.) You do not run the light right away because you first look around to see if there is a police car around. Now all three elements are in play. You stopped at the light in the first place because it turned red, and you stop at red lights. Thus, how do we understand our power in organizations? There are multiple elements— from the regulatory environment, the level of federalism, the growth of the state, and so forth.

46 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists the importance of having stakeholders who are organized and have well-defined structures. For example, veterans is a vague definition for a set of stakeholders, but the American Legion and Veterans of Foreign Wars are two critical orga - nized groups that represent veterans. What if there is no organized set of stake - holders? The first question might be, why is that true? Perhaps the stakeholders in the external environment that your organization deals with are too amorphous to be defined. In James Wil - son’s (1989) terminology, you may represent a majoritarian organization that has no discern - ible set of constituents or stakeholders other than the public. If that is the case, stakeholder power will be more limited for your organization. At the other end of Wilson’s stakeholder organiza - tional model are client agencies whose power is defined heavily through a strong relationship with a single client group. In those cases, the or - ganizations must seek to avoid being captured by that single clientele group (Wilson, 1989). However, we have found that many organi - zations have developed stakeholder groups over time (often for nonpolitical reasons), which gen - erates some level of influence. One of our favor - ite examples comes from outside the healthcare arena—police departments. If one thinks about nat - ural constituents or stakeholders, a police depart - ment’s most obvious stakeholders are those who commit crimes—we are not sure how to build a stakeholder group there! Over time, police depart - ments have developed a host of support organiza - tions, including neighborhood watch groups. The reason they are created is not to influence politi - cal decisions about police departments, but strong neighborhood watch groups (organized across a city) can become a critical secondary stakeholder group for a police department. Who organized those neighborhood watches? Generally, police departments took the lead and the neighborhood watch groups typically support what is being pro - posed by the police department. The example of a children’s hospital is appro - priate here. One might argue that on a day-to-day basis, the constituents of such a hospital are the patients. They are children, but maybe we would Stakeholder analysis is tied to the network of stakeholders and which sets of stakehold - ers are closer to your organization and which are more distant. This close/distant issue is of - ten defined in terms of natural and face-to-face relationships—ideally, which groups deal with your agency or policy arena on a routine, con - stant basis and which groups deal with your organization on a more limited basis. Thus, the classic stakeholder map often has concen - tric circles of groups and organizations that are closer and further away from the organization based on the level of interdependence and orga - nizational closeness (Fottler, Blair, Whitehead, Laus, & Savage, 1989). If you represent a veter - ans’ hospital, for example, members of veter - ans’ organizations, such as the American Legion or Veterans of Foreign Wars, are more central to your organization, but if you are working at a children’s hospital, that organizational tie is irrelevant. Thus, understanding how central other stakeholders are to the organization may be the first part of a stakeholder analysis ( FIGURE 3-3). To understand stakeholder power for an or - ganization, one must define it in terms of orga - nized stakeholders. When working with various healthcare organizations, we often hear stake - holders described in individual terms (e.g., pa - tients or customers), but the key is to recognize FIGURE 3-3 Simplified stakeholder map Secondary stakeholders Less relevant stakeholders Core stakeholders Organization programor Stakeholder Power 47 and has detailed how to expand the relationships with both nurses and other stakeholder groups in the field. Additionally, the National League for Nursing (2013) offers a Public Policy Advo - cacy Toolkit to guide nurses, nursing students, and nursing faculty through the levels of gov - ernmental actions. See BOX 3-1 for a list of pro - fessional nursing membership associations that address policy advocacy. To understand the ad - vocacy role, one must see the importance of the professions’ own expertise, to which we now turn.

▸ Expertise What is expert power in an organization? Some define it in terms of knowledge acquisition and professionalism. Thus, an expert organization would have a large proportion of highly edu - cated professionals, defined by advanced edu - cation, licensure, professional norms and ethical standards, and a lifetime of continuing education.

The healthcare arena has a clear advantage here. include the parents. What about parent groups?

Generally, they have limited interest in being stakeholders of the hospital; in fact, they want their children to get well and leave the hospital.

What about children suffering from a chronic illness or a long-term disease such as cancer?

Most hospitals have developed parent and chil - dren’s groups that get together periodically to support each other (and to provide additional information to the hospital and to other pa - tients and their families about coping with the illness). If the hospital’s outreach department has helped organize the group so that it estab - lishes officers and meeting dates, the group is organized! Is it the same as a veterans’ organi - zation? Clearly not, but it would be wise to in - clude such a group in any efforts to advocate for policy changes (inside and beyond the hospital). If most organizations understand the im - portance of stakeholder relationships in under - standing and utilizing political power, how does the continuing growth of collaborative/shared governance impact that role? At the core of most applications of collaborative models is the need to identify and strengthen all direct and indi - rect partners in the collaborative process. From a personal toolkit perspective, many have em - phasized the importance of creating stakeholder analyses and maps of one’s organizational net - work. If the relationship will be more dynamic and evolving depending on the particular ele - ment of the stakeholders in a collaborative rela - tionship, how much more essential is a continuing in-depth stakeholder analysis? Indeed, in much of the collaborative literature, moving organiza - tions, advocates, and support structures within the policy partnerships (and back out when no longer part of the process) becomes a day-to-day requirement and essential to the ongoing success of the collaborative policy advocacy network. Finally, we suggest that most professional groups have delineated additional ways to de - velop clear stakeholder relationships because they have a stake in what happens within the day-to-day operations of an organization. In nursing, for example, the American Nurses Asso - ciation (2013) has created an advocacy network 48 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists BOX 3-1 Professional Nursing Membership Associations That Address Policy Advocacy American Academy of Nursing (AAN) – www.aannet.org American Association of Nurse Practitioners (AANP) – www.aanp.org American Association of Colleges of Nursing (AACN) – www.aacn.nche.edu American Nurses Association (ANA) – www.nursingworld.org American Organization of Nurse Executives (AONE) – www.aone.org International Council of Nurses (ICN) – www.icn.ch/ National Council of State Boards of Nursing (NCSBN) – www.ncsbn.org National League for Nursing (NLN) – www.nln.org Sigma Theta Tau International Honor Society of Nursing – www.nursingsociety.org advanced practice registered nurse (APRN), cer - tified registered nurse anesthetist (CRNA), clin - ical nurse specialist (CNS), or other advanced practice nurse. But it does see the difference be - tween a general practitioner in medicine and a specialist in oncology. What is the difference?

We suggest that the public is convinced (gener - ally through well-defined efforts by the medical establishment) that there are differences in be - havior in the various medical specializations and that some of them have more expertise power be - cause the public perceives them as more expert.

Why is that not as true in nursing? We think part of the explanation is that the nursing profession has been reluctant to publically emphasize the differences among the various areas of nursing professionalism. We suggest that this limits the political capacity of the various specializations to garner separate political support. Buresh and Gordon (2000) proclaim that nurses are not recognized as a profession because they do not educate patients and their families, friends, and communities about nursing work.

If the voice and viability of nursing were com - mensurate with the size and importance of nurs - ing in health care, nurses would receive the three Rs: respect, recognition, and reward. These au - thors expound that if the work of nurses is un - known or misunderstood, then nurses cannot be appreciated or supported and cannot exert appropriate influence in health care. They go on to say that the general public needs to know what nurses do today and why their work is es - sential. The Institute of Medicine’s The Future of Nursing: Leading Change, Advancing Health re- port (2011) proclaims, “The nursing profession must produce leaders throughout the health care system, from the bedside to the boardroom, who can serve as full partners with other health pro - fessionals and be accountable for their own con - tributions to delivering high-quality care while working collaboratively with leaders from other health professions” (p. 221). Those in a position to influence legisla - tion, policy making and funding must know that health care environments The various professions within any existing health - care arena are often complex, and they have special - ized education, training, and licensure at virtually every level of professional delivery of services.

Such professionalized organizations often begin with a noticeable advantage over other organi - zations in which there is little or no profession - alized work force because of their expertise that lends added weight to their advocacy positions. Thus, any definition of organizational exper - tise must begin with the nature of the expertise of the organization and whether it is well devel - oped and professionalized and of the highest ed - ucational standards; however, one must be careful about defining this power simply as a set of ac - quired educational or professional standards. In the end, it is a bit like a traffic light—all the diplo - mas, certificates, and licensures do not necessar - ily mean the expertise is perceived as powerful.

Similar to the number of stakeholders not being as important as the proximity of stakeholders to the decision makers, not all experts carry equal weight when it comes to organizational decisions. What is the key to this expertise? It is the per - ception of others that the expertise is legitimate.

Many healthcare professionals blunder here be - cause they believe a variety of graduate and pro - fessional degrees automatically leads to support of their expertise. To put it in simple terms, many occupations (especially in the healthcare arena) are licensed, certified, and with advanced educa - tion, but they do not have equal expertise power.

Why? Maybe because the public or the broader political and policy environment does not dif - ferentiate the various specializations, or the ex - pertise of the profession is recognized strongly only by the profession itself. The public tends to understand expertise hierarchically. The ex - pertise of physicians carries more weight than other professionals within the healthcare system. The best example today is the widespread public agreement about the need for more nurses.

How does that translate generally? The public does not differentiate well between licensed practical nurse (LPN), registered nurse (RN), diploma, As - sociate Degree (AD), Bachelors of Science in nurs - ing (BSN), Master of Science in nursing (MSN), Expertise 49 environment. When policy is being made inter - nally, such as in a hospital, about how practices are implemented, changed, evolved, or reorga - nized, is the profession you represent at the ta - ble in the discussion? If not, why? We all understand how professions develop expertise over time. They have specialized de - grees, certifications, accreditations, licensures, state associations, and so forth. For the nursing profession there is no higher recognition than a Magnet designation for a healthcare organi - zation. The American Nurses Credentialing Center’s Magnet Recognition Program recog - nizes healthcare organizations for quality pa - tient care, nursing excellence, and innovations in professional nursing practice. The organiza - tion says, “Consumers rely on Magnet designa - tion as the ultimate credential for high quality nursing” (American Nurses Credentialing Cen - ter, 2013, p. 1). It is agreed that it is important for excellent nursing care to be recognized and rewarded, but why don’t all healthcare organizations have Mag - net status? Many hospitals have tried and failed; others elect not to go for Magnet status. What does that tell us about this professional issue?

It is still desirable but not everyone is doing it; therefore, it is controversial. Many healthcare institutions cannot afford the Magnet journey.

For others, they cannot meet the level of nurs - ing education and expertise that is required due to size, location, and so forth. Thus, as we develop the toolkit for expert power, we must ask a critical question: Who be - lieves this expertise of a profession is valued and should be represented in the decision-making process both within and beyond the organization? Let us not lose sight of the increasing reality of expertise within collaborative environments.

One of the key components to most analysis of collaborative networks is the need for evolv - ing expertise in accomplishing the tasks within a policy advocacy network. The literature in public administration is rich with two compo - nents of expertise in such a network: bringing specific expertise to a short-term involvement in a collaborative network, and expanding all rich in nurses promote high levels of health whereas understaffed settings put patients at risk. They need to be aware of the incipient tragedies awaiting patients when nurses are not available to prevent falls, complications, errors in treatment and care or to rescue patients in need. (Buresh & Gordon, 2000, p. 18) An example of how nurses fail to commu - nicate their expertise can be found in the simple example of dress. Professionals are often recog - nized by their attire or uniform. The behavior and dress of nurses today tend to downplay pro - fessionalism by blurring the identity of nurses and making the place of nursing in health care more ambiguous. In healthcare settings, it is of - ten not easy for patients or families to pick out who is a nurse and who is not. Buresh & Gor - don (2000) proclaim that without a protocol to provide clarity, it is up to individual nurses to convey who they are through their appearance, behavior, and language. It has become a com - mon practice for nurses in hospital settings to not tell or show their last name on name tags.

Physicians would certainly not do this. When members of the largest healthcare profession (nurses) opt out of the standard professional greeting, they risk communicating that they do not regard themselves as professionals (Buresh & Gordon, 2000). Can you imagine hospitals saying today, as they did 20 to 30 years ago, that they cannot af - ford to staff with registered or BSN-prepared nurses? What has pushed that bar? The Institute of Medicine’s report on the future of nursing recommends that we “increase the propor - tion of nurses with a baccalaureate degree to 80 percent and double the number of nurses with a doctorate by 2020” (Institute of Medi - cine, 2013, p.1). Thus, exerting expert power in an organi - zational setting must also include addressing some important issues, not the least of which is the belief that the expertise of the particular set of professionals has a valid place in the policy 50 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists build a stronger perception of the importance of our expertise with those who work with our programs and agencies? 4. Looking at Figure 3-1, how do organizations overutilize the force component in organizational power?

What kinds of evidence would you expect to see in an organization that is not using influence or authority well? 5. Given the need for greater collabora - tion in the health policy arena, how does improving your stakeholder relationships with other organizations and interests become even more important? References Allen, D., Calkin, J., & Peterson, M. (1988). Making shared governance work: A conceptual model. Journal of Nursing Administration, 18 (1), 37–43. American Nurses Association. (2013). Advocacy—becoming more effective. Retrieved from http://www.nursingworld. org/MainMenuCategories/Policy-Advocacy/Advocacy ResourcesTools American Nurses Credentialing Center. (2013). ANCC Magnet Recognition Program. Retrieved from http://www.nursecredentialing.org/Magnet.aspx Anthony, M., (2004). Shared governance models: The theory, practice, and evidence. Online Journal of Issues in Nursing 9 (1), manuscript 4. Buresh, B., & Gordon, S. (2000). From silence to voice: What nurses know and must communicate to the public. Ottawa, Ontario: Canadian Nurses Association. Fottler, M. D., Blair, J. D., Whitehead, C. J., Laus, M. D., & Savage, G. T. (1989). Assessing key stakeholders: Who matters to hospitals and why? Hospitals and Health Services Administration, 34 (4), 525–546. Institute of Medicine. (2011). The future of nursing: leading change, advancing health. National Academies Press, Washington, DC. Institute of Medicine. (2013). The future of nursing: leading change, advancing health. Retrieved from http://www .thefutureofnursing.org/recommendations National League for Nursing. (2013). Faculty programs and resources: Public policy advocacy toolkit. Retrieved from http://www.nln.org/facultyprograms/publicpolicytoolkit /publicpolicytoolkit.htm Wilson, J. Q. (1989). Bureaucracy: What government agencies do and why they do it. New York, NY: Basic Books. participants’ capacity to expand their own ex - pertise in a shared fashion. Put another way, an effective policy advocacy network needs to share knowledge more effectively, not just add experts to the policy environment.

▸ Conclusion Politics and policy require an understanding of how to build support and adapt to change. If we are to be effective advocates, we must be respon - sive to broader societal needs. Building support is not done simply by presenting the facts. This toolkit is designed to help readers know what it takes in a political environment to build a case and adapt when necessary. A huge mistake in advocacy is to simply believe that the facts are on our side, and if we just continue to list the facts, everyone will believe! In reality, values and political issues are at the core of success - ful change. Our tasks as political advocates for change are as follows:

■ Believe we can convince others to adapt. ■ Adapt ourselves to handle broader political value issues. ■ Learn to mobilize our expert power as one of the largest groups of stakeholders in the healthcare field. Discussion Questions 1. As you read through this chapter, describe the political environment of your own organization, both at the largest level and at a division or office level. 2. Internal and external stakeholders are important to any organization or policy. Describe your view about reliance more on internal stakeholders than on external stakeholders, and vice versa. Why do you think there are differences? 3. Expertise power is often difficult to define in detail, but how do we 51 References stakeholders and type of expertise involved.

The questions following each case study are helpful for group discussion and individual analysis. This chapter concludes with one ad - ditional case study that has not had any po - litical result to date, and readers are asked to analyze that case in terms of how one might build the necessary political stakeholder and expert power.

External Expert Power The first two cases are doubtless well known to readers, but what may not be well known is the history of policy development in these areas. As you examine these two case studies, remember that their purpose is to show the role of exper - tise in affecting policy. ▸ Toolkit Case Studies The case studies included at the end of this toolkit chapter are designed to aid the reader in understanding the politics of organizational power. They are divided based on four catego - ries: external stakeholder, internal stakeholder, external expertise, and internal expertise. Each of these real-life case studies illustrates how health professionals have applied the tools as highlighted within this chapter. The case study authors have included references when appli - cable. To guide your comprehension and appli - cation of the toolkit, the authors have included several thought-provoking questions at the end of each case study. Readers are encouraged to critically analyze the political methods and power used in each case study, exploring the CASE STUDY External Stakeholder Power:

Margaret Sanger as Nurse and Public Health Advocate Ellen Chesler “No gods, no masters,” the rallying cry of the Industrial Workers of the World, was her personal and political manifesto. Emma Goldman, Bill Haywood, Mabel Dodge, and John Reed were among her earliest mentors and comrades. Allied with labor organizers and bohemians, Margaret Sanger first emerged on the American scene in those halcyon days at the turn of the 20th century when the country seemed wide open with possibility, before world war, revolution, and repression provided a more sober reality. She organized pickets, protests, and pageants in the hope of achieving wholesale economic and social justice. What began as a callow faith in revolution quickly gave way to a more concrete agenda for reform. Working as a visiting nurse on New York City’s Lower East Side, she watched a young patient die from the complications of a then-common illegal abortion, and vowed to abandon palliative work and devote herself to a single-minded pursuit of reproductive autonomy for women. Sanger proudly claimed personal freedom for women. She also insisted that the price women pay for equality should not be at the sacrifice of personal fulfillment. Following in the footsteps of a generation of suffragists and social welfare activists who had forgone marriage to gain professional stature and public influence, she became the standard bearer of a less ascetic breed, intent on balancing work and family obligations. The hardest challenge in writing this history for modern audiences, for whom these claims have become routine, is to explain how absolutely destabilizing they seemed in Sanger’s time.

Even with so much lingering animus toward women’s rights today, it is hard to remember that reproduction was once considered a woman’s principal purpose and motherhood was her primary role—women were assumed to have no need for identities or rights independent of those they enjoyed by virtue of their relationships to men. This principle was central to the long- enduring opposition women have faced in seeking rights to work, to inheritance and property, to suffrage, and especially to control of their own bodies. 52 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists contraceptive materials and use the federal mail for transport. The ruling effectively realized years of failed efforts to achieve legislative reform in the U.S. Congress, although it did formally override prohibitions that remained in several states until the historic ruling in Griswold v. Connecticut with its claim of a constitutional doctrine of privacy, later extended so controversially to abortion in Roe v. Wade .

With hard work and determination, she was able to mobilize men of influence in business, labor, academia, and the emerging professions.

No less critical to her success was her decision to invest in the collective potential of women, many of whom had been oriented to activism by the suffrage movement and were eager for a new cause after finally winning the vote in 1920. She also lobbied the churches, convincing the clerical establishments of the progressive Protestant and Jewish denominations of the virtue of liberating sexuality and reproduction from the shroud of myth and mystery to which traditional faiths had long consigned them. She even won a concession from the hierarchy of the American Catholic Church, which overruled the Vatican and endorsed natural family planning, or the so-called rhythm method, as a way of countering the secular birth control movement and reasserting religious authority over values and behavior. With an uncanny feel for the power of well-communicated ideas in a democracy, Sanger moved beyond women’s rights to put forth powerful public health and social welfare claims for birth control. She proved herself a savvy public relations strategist and an adept grassroots organizer. Through the 1920s and 1930s she wrote best-selling books, published a widely read journal, and crisscrossed the country and circled the globe to give lectures and hold conferences that attracted great interest and drove even more publicity. She built a thriving voluntary movement to conduct national- and state-level legislative lobbying and advocacy and to work in communities on the ground, sustaining affiliate organizations that organized and operated pioneering women’s health clinics. Offering a range of medical and mental health services in reasonably sympathetic environments, many of these facilities became laboratories for her idealism. Yet the birth control movement stalled during the long years of the Great Depression (1929-1939) Sanger needed broader arguments. By practicing birth control, women would not just serve themselves, she countered. They would also lower birthrates, alter the balance of supply and demand for labor, alleviate poverty, and thereby achieve the aspirations of workers without the social upheaval of class warfare. It would not be the dictates of Karl Marx, but the refusal of women to bear children indiscriminately, that would alter the course of history, a proposition ever resonant today as state socialism becomes an artifact of history, while family planning, although still contested, endures with palpable consequences worldwide. In 1917, Sanger went to jail for distributing contraceptive pessaries to immigrant women from a makeshift clinic in a tenement storefront in the Brownsville section of Brooklyn. Sanger’s contribution was to demand services for the poor that were available to the middle class. Her heresy, if you will, was in bringing the issue of sexual and reproductive freedom out into the open and claiming it as a woman’s right. She staged her arrest deliberately to challenge New York’s already anachronistic obscenity laws—the legacy of the notorious Anthony Comstock, whose evangelical fervor had captured Victorian politics in a manner eerily reminiscent of our time—and it led to the adoption, by the federal government and the states, of broad criminal sanctions on sexual speech and commerce, including all materials related to contraception and abortion. Direct action tactics served Sanger well, but legal appeal of her conviction also established a medical exception to New York’s Comstock Law.

Doctors—although not nurses, as she originally intended—were granted the right to prescribe contraception for health purposes; under that constraint she built the modern family planning movement with independent, freestanding facilities as the model for distribution of services, a development that occurred largely in spite of leaders of the medical profession who remained shy of the subject for many years, and did not formally endorse birth control until 1937, well after its scientific and social efficacy was demonstrated. By then, Sanger and Hannah Stone, the medical director of her New York clinic, had also achieved another legal breakthrough. They prevailed in a 1936 federal appellate court decision in New York state that licensed physicians to import 53 Case Study CASE STUDIES at home and abroad. A team of doctors and scientists she had long encouraged marketed the oral anovulant birth control pill, and a resurgent feminist movement gave new resonance to her original claim that women have a fundamental right to control their own bodies. Hundreds of millions of women and men around the world today freely practice some method of contraception, with increasing reliance on condoms in light of the epidemic spread of HIV/ AIDS and other sexually transmitted infections.

This represents a sixfold increase since rates of population growth peaked in the 1960s. Still, half the world’s population today—nearly 3 billion people—are under the age of 25 years.

Problems associated with widespread poverty, food insecurity, and environmental degradation are widespread. There remains considerable unmet need for family planning, and there is tragically insufficient funding for research on new methods and for new programming to meet ever-increasing demand. Funding for both population and development programs has slowed dramatically, as other needs compete for funds and as concern now spreads about an aging and shrinking population in many countries where birthrates have sharply declined. The cycles of history repeat themselves.

Case Study Questions 1. Why was the expertise of effective birth control not widely shared, and why did it take the medical establishment so long to endorse policy change in this area? Clearly, the women’s movement was part of the opening of change in this area, but how did it contribute to the creation of knowledge? 2. Have there been changes in recent years in the broader environment that are analogous to the early adoption of birth control programs (e.g., RU-486, or the so-called morning after pill)? 3. Have these changes increased or limited access to birth control? Think through the acceptance of the expertise in this area and the ways in which it has contributed (or limited) the change in policy in this environment and the ways in which it has not been taken into account. 4. Can you illustrate how expertise is still about perception, both within professional fields and in the broader public? and World War II (1939-1945), stymied by the increasing cost and complexity of reaching those most in need and overwhelmed by the barrage of opposition it engendered. The issue remained mired in moral and religious controversy, even as its leadership determinedly embraced centrist politics and a sanitized message. When hard times encouraged attention to collective needs over individual rights and when the New Deal legitimized public responsibility for economic and social welfare, Sanger cannily replaced the birth control moniker with the more socially resonant family planning . She invented both terms and popularized them after consulting allies and friends. Having enjoyed Eleanor Roosevelt’s enthusiastic support and personal friendship in New York, Sanger went to Washington, DC in the 1930s, hoping that Congress would overturn the Comstock law and legalize contraceptive practice as a first step to her long-term goal of transferring responsibility and accountability for services from small, privately funded clinics to public health programs with appropriate resources and scale.

However, she failed to anticipate that the success of the Roosevelts would depend on a delicate balance of the votes of conservative urban Catholics in the north and rural, fundamentalist Protestants in the south. There would be no invitations to tea at the White House and no government support, at least until Franklin Roosevelt was safely ensconced in a third term. Embittered by these controversies and disenchanted with the country’s increasing pronatalism after World War II, Sanger turned her attentions abroad. In 1952 she founded the International Planned Parenthood Federation, with headquarters in London, as an umbrella for the national family planning associations that remain today in almost every country. By the time of her death in 1966, the cause for which she defiantly broke the law had achieved international stature. Although still a magnet for controversy, she was widely eulogized as one of the great emancipators of her time. She lived to see the U.S. Supreme Court provide constitutional protection for the use of contraceptives in Griswold v. Connecticut . She watched Lyndon Johnson incorporate family planning into America’s social welfare and foreign policy programs, fulfilling her singular vision of how to advance opportunity and prosperity, not to speak of human happiness, 54 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists CASE STUDIES to educate legislators about advanced practice nursing and how this type of nurse could address the healthcare needs of Arkansans. The study bill was assigned to the Interim Public Health, Welfare, and Labor Committee of both the state House of Representatives and the Senate. Several public hearings were held by the committee, and various groups and individuals—both in support and in opposition—were given the opportunity to voice their opinions. During the hearings, there were opportunities to provide correct information supported by the literature. Clarification of the proposed legislation was also on the agenda. At one point, concern was raised about the use of the term collaboration with medicine , as some persons preferred to use supervision or a definition that would limit the practice to one being supervised. The task force initiated a process to define the term collaboration . A review of the literature showed that collaboration had already been defined in the 1970s by both medicine and nursing. Armed with that information and definitions given by other sources, the task force reported their findings at the next hearing, and the definition jointly developed by medicine and nursing was incorporated into the proposed legislation.

Process for Success The leadership of the ArNA understood the monumental task and the many challenges and barriers to addressing the healthcare needs of Arkansans. The association decided that appointing a special task force to lead its efforts was the best strategy. This strategy provided a mechanism for focusing on the issue while ensuring that the health policy committee would continue to focus on broader policy issues. The association selected a chair, included the chair in member selection by ArNA leadership, and established the first meeting. As the process evolved, two cochairs, a secretary, and a treasurer were named. The task force was representative of nursing broadly and included members of the Arkansas State Board of Nursing, advanced practice nurses with master’s degrees (e.g., midwives, certified registered nurse anesthetists, nurse practitioners, and clinical nurse specialists), registered nurses, faculty from schools of nursing who prepared advanced practice nurses, and representatives from other nursing organizations.

The task force met every other week during the CASE STUDY External Stakeholder Power:

Successful Efforts to Pass Advanced Practice Nurse Legislation Claudia J. Beverly The Arkansas State Legislature meets every other year to conduct the business of the state. In the year preceding the legislative session, the Policy Committee of the Arkansas Nurses Association (ArNA) examines the healthcare needs of the state and designs a strategic health policy plan for nursing that will be introduced in the upcoming session. The work is always initiated with a clear understanding of the needs of the state’s citizens. In this rural state, 69 of the 75 counties are medically underserved. The poverty level is one of the worst in the country. The health statistics of Arkansans are in the bottom four states, and several counties do not have a single primary care provider. Given the many healthcare challenges facing the state, nurses are in a key position to address these needs, and society expects them to do so. In the early 1990s the ArNA, which represents all nurses in Arkansas, concluded that advanced practice nurses were best prepared to address the primary healthcare needs of Arkansans. At that time, however, there was no standardization or clear regulation for this level of nurse other than national certification and the registered nurse (RN) license that is basic for all levels of registered nurses. The ArNA’s first attempt to address the primary healthcare needs of the citizens was in 1993. Their attempt to pass legislation that would allow prescriptive authority by advanced practice nurses failed. After this failure, the ArNA, with the assistance of its lobbyist, began to develop legislation for introduction in the 1995 legislative session to provide a mechanism for advanced practice nurses to practice to the extent to which they are academically prepared. Additionally, a mechanism whereby society could be assured of safe practice by all providers needed to be in place. The process began when a legislator from a rural area with the greatest need introduced a study bill. This bill provided an opportunity for the ArNA 55 Case Study CASE STUDIES practice nurses were to be regulated by nursing, and the legislation acknowledged national certification and educational requirements. Prescriptive authority was granted, and selected scheduled drugs could be ordered by an advanced practice nurse. Reimbursement to advanced practice nurses was lost at the last minute. For advanced practice nurses in the field of geriatrics, Medicare passed reimbursement regulations in 1997. Medicaid reimburses geriatric nurse practitioners according to national guidelines. Reimbursement is critical to meeting the needs of Arkansas citizens and is a topic that is still being discussed. Many individuals participated in this successful campaign. A clear vision, legislation based on evidence and current literature, a comprehensive strategic plan, education of all parties (including those in opposition and those in support), and well-informed legislators were critical to success. Probably the most critical message in health policy legislation is to focus on the needs of the citizenry and what nursing needs to contribute.

Case Study Questions 1. We suspect that most nursing professionals can expand on this case; however, the key question is: What was the nature of building a stakeholder network? 2. Who were the critical first players in this movement, and why was their involvement critical? 3. As the network expanded, which other professional groups were involved? Why were those groups, and not others, involved? 4. Do you see why some professions were the logical next parts of the coalition for adopting change? 5. Who was most likely to oppose advanced practice nursing? Obviously, you do not include likely opponents in the initial development of the network of stakeholders, but why? 6. How did the coalition eventually succeed through this inclusive network? 7. What would you have done differently in a different practice arena? 8. What does this case study tell you about building stakeholders for advancing practice? 9. What would you need to do to apply this policy to advancing roles in your healthcare setting? first 6 months of the 2-year preparatory period, then weekly for the remaining year and a half. The first order of business was to develop a strategic plan that included establishing a vision, mission, goals and objectives, strategies, and time line. The vision was critical as a means of keeping task force members focused on the vast needs of Arkansans, particularly those in rural areas. The vision statement also served to keep the broader ArNA membership focused. A literature search on advanced practice nursing and health policy issues was conducted, and articles were distributed to all task force members. The assumption was that all of the members needed information to expand their current knowledge. Subcommittees were developed based on goals and objectives and the operational needs of the task force. Chairs were assigned for each subcommittee, and thus began the 2-year journey. The American Nurses Association (ANA) played a vital role in the process. The legal department was available to assemble and provide information, offer guidance, and identify potential barriers and challenges. The support provided by the ANA was pivotal to our success. The work of the task force focused on external and internal strategies. External strategies focused on stakeholders, which included the Arkansas Medical Society, the Arkansas Medical Board, and the Pharmacy Association. Understanding the views of our colleagues in other disciplines and identifying the opposition to our plans were critical to our success. Many meetings focused on educating those disciplines about the legislation we were seeking.

Often this was a balancing act, providing the right information but not too much of our strategy while attempting to keep our enemy close. We valued the process of negotiation and participated in many opportunities to negotiate with colleagues. Throughout this process, the ArNA did have a line in the sand, defined as the point at which there was no negotiation. Our line in the sand included regulations of advanced practice nurses by the Arkansas State Board of Nursing and reimbursement paid directly to the nurses. These two points were never resolved until a vote on the legislation occurred. The good news is that the advanced practice nurse legislation passed successfully in 1995. The legislation was successful in that the criteria for an advanced practice nurse to be licensed in the State of Arkansas were written by nursing, advanced 56 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists CASE STUDIES members of the Arkansas Department of Health (ADH) who are involved in the newborn screening program administration and laboratory testing, physicians from Arkansas Children’s Hospital genetic clinic, and interested parties that either work in the area of genetics or are parents of children with genetic conditions. The main purpose of the committee has been to coordinate care and to try to educate the public about genetic conditions and screening for newborns. The ADH receives samples from about 95% of the newborns in the state and does screening at their central location in Little Rock.

When an infant is identified with a newborn genetic condition, the ADH notifies the community hospital and the assigned pediatrician, who counsels the family and develops a plan for care and follow-up. Expanding the screening program to the existing March of Dimes List of 29 created several problems. The committee, however, felt strongly that it should take an advocacy role to address these concerns. The first problem was the cost of increased screening. Although most of the individual cost for each child could be absorbed by insurance or Medicaid reimbursement, as in other states, the initial financial support would need to be provided by the state. The ADH had no provision for increasing funding but estimated that the increased cost would be as follows: ■ Two million dollars for equipment and supplies ■ The addition of at least two more laboratory technicians to do the increased testing ■ The addition of at least one more public health nurse to coordinate the increased number of identified genetic cases ■ Training for new and current personnel on the new equipment ■ Personnel time to develop and coordinate the expansion of the program ■ Development of an education program to make parents and professionals aware of the changes.

Overall the estimated cost for start-up was approximately $3 million, some of which could be recouped after billing for the tests was established. The committee and ADH decided that we would outline a plan for expansion with CASE STUDY Internal Expertise Power:

Expanding Newborn Screening in Arkansas Ralph Vogel Strides in technology have created great advances in how we can provide services to families and their children. A prime example is the expansion of newborn screening, which has dramatically increased the number and type of genetic conditions that can be detected immediately after birth. Historically, most states have screened for hemoglobinopathies (like sickle cell anemia), thyroid disorders, phenylketonuria, and galactosemia. These conditions, along with newborn hearing screening, were relatively easy to administer at a cost-effective rate. With advanced laboratory and computer technology, we can now add multiple genetic conditions that are identified during a single run.

In 2004 the March of Dimes proposed expanding the genetic conditions for which newborns are screened to their List of 29, including several enzyme deficiencies and cystic fibrosis. The cost of the limited newborn screening had been approximately $15 per newborn, and it would increase to about $90 with the expanded list.

Insurance companies would cover the cost of adding the additional conditions. The value of newborn screening is in identifying genetic conditions early and implementing treatment plans from birth. Over a life span, this greatly reduces the morbidity and mortality associated with later diagnosis. With some conditions, the care can be as simple as a dietary change that is implemented from birth. Early diagnosis also allows for genetic counseling with families about the risk that additional children will have the condition. Many states adopted this recommendation quickly, although the process has been slower in others. In Arkansas a committee, titled the Arkansas Genetics Health Advisory Committee (formerly Service), has existed for several years. Its mission is to monitor health care related to genetics in the state. This diverse committee includes several 57 Case Study CASE STUDIES doing expanded screening of newborns, they were more receptive to our plan. After we started to discuss funding with legislators during the legislative session, they seemed willing to support newborn screening. But we had a surprise: They said it did not require any special legislation or special funding; the ADH could expand newborn screening without their approval because this was already within their realm of responsibility.

Funding could be obtained by submitting a budget request to cover the cost of expansion. The interim head of ADH was willing to support this because the head of the newborn screening section was on our committee. By fall we had the budget expansion approved and support for newborn screening expansion. The decision was then made to target July 1, 2008 as the date to start the expanded program. After we knew the finances and political support were confirmed, we developed a time line that involved equipment acquisition, training for ADH staff, an education program for the public, and a plan for making community hospitals and professional healthcare providers aware of the expansion. At this point the ADH contacted members of the media with whom it had worked in the past and developed a plan for public information advertisements to be run on television and radio. These began running in early May, 2 months before the July 1 start date. Because the media members had worked with ADH in the past, it was much easier to develop the advertisements.

Print media advertisements were also started, and the local chapter of the March of Dimes provided funding and brochures that were distributed to OB/GYN physicians in the state to make expectant mothers aware of the testing to be done on their newborns. One of the members of the committee also wrote an article that appeared in the March issue of the Arkansas State Board of Nursing Update magazine, which is distributed to 40,000 healthcare providers in the state. In July the expanded screening began, and it has been continued with a relatively smooth transition, largely because of the preparation of the ADH staff in the laboratory and the outreach nurses. Because of the public awareness campaign, there has been little voiced concern from parents, and there seems to be an awareness of the value of the expanded screening. estimated costs and submit it to the director of the ADH, Dr. Faye Bozeman. With his approval, we would then approach legislators and ask for the needed funding to be included in the upcoming budget. Because the Arkansas state legislature convened only every 2 years, it would be critical to move forward over the next 6 months. We prepared a letter to Dr.

Bozeman that the committee approved on a Friday with the intention of mailing it on the following Monday. The next day, Saturday, Dr.

Bozeman was killed in an accident on his farm; therefore, we were in a quandary about who should receive the letter and whose approval would be needed in the ADH. During the next 6 months there was an interim head, who was thrust into the position and did not want to approve anything at this level of expense. We were on hold until a permanent director was named. After about 3 months, we decided to take another tack and develop a plan to seek legislative approval for funding and then approach the new ADH director after the person was named. We developed a list of legislators to contact and identified members of the committee who had worked with the legislators in the past and could approach them. By this time, we were 2 months from the legislature convening and knew that after it convened nothing new would be introduced; therefore, we had to get support ahead of time. We approached some legislators and received tacit support, but none were willing to introduce a new bill or request funding without a permanent head of ADH. We had lost the opportunity for funding until the next legislative session in 2 years. The committee decided to continue to seek support from the legislators and ADH with the idea of gaining funding in 2 years. Meanwhile, we began to look at other states and what newborn screenings they were currently doing to make sure that politicians were aware of national standards.

We had identified that Arkansas was one of the last five states to not expand newborn screening, and all of the surrounding states in the region had incorporated all or a large part of the March of Dimes List of 29. Making legislators aware of this became one of our goals; once they realized that the states surrounding Arkansas were already 58 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists CASE STUDIES Final Case Study This final case study is presented to stimulate the reader’s political thinking. We encourage you to read the case carefully and then consider how you would go about creating an environ - ment for policy change. CASE STUDY Workplace Violence Steven L. Baumann and Eileen Levy In the wake of the terrorist attack of September 11, 2001 and a series of tragic school shootings, workplace violence has gained national attention in the United States. Although nurses and other healthcare workers are generally well educated and regularly reminded to practice good handwashing and infection control, there is little attention given to the potential for violence in hospitals and other healthcare settings, even though it is common and can have devastating long-term consequences (U.S. Department of Health and Human Services, 2002; U.S.

Department of Labor, 2004). According to Love and Morrison (2003), nurses who sustain injuries from patient assaults, in addition to suffering psychological trauma, are often out of work for periods of time, have financial problems, show decreased work productivity, make more errors at work, and report a decreased desire to remain a nurse. In addition to these problems, nurses who have been assaulted report feeling less able to provide appropriate care to their patients (Farrell, Bobrowski, & Bobrowski, 2006) and are reluctant to make formal complaints (Love & Morrison, 2003). As was the case with needlestick injuries in the past, many organizations do not openly discuss problems that increase the risk for violence, nor do they adequately prepare for episodes of violence, leaving nurses more likely to blame themselves for its occurrence. The National Institute for Occupational Safety and Health (NIOSH), the same organization that requires hospitals to be attentive to infection Lessons learned from the process are as follows: ■ Preparation is the key to a smooth transition. ■ Know exactly what is required to proceed and who needs to approve new or expanded plans of action. If we had approached the legislature first to find out what they wanted, we could have saved time. ■ Plan for the unexpected. We could not have anticipated Dr. Bozeman’s death, but it did cause about a 6-month delay. ■ Educate everyone who is going to be involved. This includes administrators, healthcare providers, laboratory staff, parents, and professionals in the impacted communities. ■ Discuss with the media exactly what they need and use their expertise in terms of length of announcements and the best ways to distribute information.

Although the entire process took more than 2 years, in the end the transition has been very smooth, and few problems have been identified at any level. Having a diverse group on the committee was a strength, because different members had different perspectives. This gave us much greater ability to anticipate problems and coordinate care, and in the end the program will benefit newborns in Arkansas for years to come.

Case Study Questions 1. This case is a good example of how the stakeholders adapted as the intended policy change moved from internal adoption of policy to legislation back to internal adoption of policy within an existing organization. Can you see how the nature of the stakeholders defined for a legislative change is different from stakeholders for adaptation of existing policy? 2. The initial group involved in this process was established primarily as an informational group, but it was modified to advocate change. How did the group evolve to influence policy differently? If the initial group had been more broadly defined at the start, would it have made the same mistake about requiring legislative change to adopt the policy? Why or why not? 59 Case Study CASE STUDIES the case study hospital reduced inpatient and outpatient addiction services. New research suggests that actively psychotic patients with schizophrenia and patients with schizophrenia who had a premorbid conduct problem or exposure to violence are more likely to be violent than less acutely ill patients and those without substance abuse or antisocial personality comorbidity (Swanson et al., 2008). Nevertheless, it is a mistake to consider persons with mental illness or substance abuse as the only individuals who can become agitated or violent in healthcare settings.

It is also shortsighted to solely blame any single policy, such as the deinstitutionalization of the chronically mentally ill, for workplace violence in the United States. At the same time that the case study hospital has cut beds and programs for persons in distress, it has a clear mission/vision/value statement that puts professional nurses in leadership positions and has taken steps to address workplace violence.

It has made efforts to reduce violence in high-risk areas, such as the emergency department and psychiatric unit, by restricting access to these areas, using surveillance equipment and panic buttons, and strictly requiring all staff to wear identification, as other hospitals have. Community hospitals, like the one in this case study, however, often do not provide the kind of ongoing self-defense and violence prevention education and training that many psychiatric hospitals provide. In addition, all hospitals should have a task force and regularly meeting committee consisting of management, human resources/employee relations, employee assistance program staff, security, and the office of chief counsel with the sole purpose of developing policies and procedures to prevent and address workplace violence. Following The Joint Commission’s (2008) lead, the case study hospital and nursing administration have hospital-wide discussions and training on behaviors that undermine a culture of safety. In addition, the hospital requires workplace violence risk assessment, hazard prevention and control, and safety and health training, as well as careful record keeping and program evaluation (U.S. Department of Labor, 2004). Hospitals need to keep in mind the malpractice crisis in this country. The move to put patients first does not turn over control of the hospital to patients or their families. Indeed, control strategies and proper handling of hazardous materials, also provides clear definitions and guidelines to reduce the potential for violence in the workplace. According to NIOSH, workplace violence includes acts of physical violence or threats of violence directed toward people on duty or at work (U.S. Department of Health and Human Services, 2002). NIOSH has recognized employer responsibilities in mitigating workplace violence and assisting employees who are victims (Love & Morrison, 2003). The U.S. government has required employers to provide safe workplaces since 1970 (U.S. Department of Labor, 2004). These federal guidelines call for hospitals and other organizations to incorporate written programs to assure job safety and security into the overall safety and health program for their facilities.

Violence prevention, they suggest, needs to have administrative commitment and employee involvement. This case study is of a moderate-sized, nonprofit community hospital in the New York metropolitan area. As in many parts of the United States, this hospital and the communities it serves are becoming increasingly crowded and diverse. In this environment of change and tension, the hospital is a meeting place of people, many not by choice but in crisis, bringing together dramatically different histories, backgrounds, educational attainment, and cultures. The hospital and its clinics have become increasingly stressful, unpredictable, and at times hostile places. For example, the use of hospitals as holding tanks for acutely disturbed and violent individuals, the release of mentally ill persons from public hospitals without adequate outpatient programs and follow-up services, and the accessibility of handguns and drugs in communities all contribute to hospital and community violence. A failure of leadership at various levels, as well as inadequate reimbursement from payers, has contributed to violence that can occur on its premises. The case study hospital, like most in the United States, has dramatically reduced the number of public psychiatric beds. Many of these former psychiatric patients have to rely on outpatient mental health services supported by community hospitals with a limited number of beds on one or two psychiatric units. In addition, 60 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists CASE STUDIES Case Study Conclusion A community hospital in the New York metropolitan area is presented as a case study of an organization struggling to carry out its mission in a way that facilitates the growth and well-being of its employees. The hospital is experiencing different pulls. On one hand, it has had to cut back on essential programs. On the other hand, the nurses and the central leadership in the hospital need to work together to avoid quick-fix solutions and suffer the failure of nerve that Friedman (2007) talked about. The busy hospital environment in a changing society is stressful and, at times, hostile and violent.

Nurses need to be effective leaders to help protect the integrity of the hospital as an organization—to maintain its self-definition. They can best do this by becoming as self-defined as possible and by consistently implementing federal guidelines to prevent and manage workplace violence.

Case Study Questions In this case there is a need for policy change—the need for workplace violence policies. Here is our challenge to the reader. Can you take our two components, both an internal and external role, and define what needs to be done to accomplish this policy change? We suggest that you define the work in terms of your most likely environment, whether it is a psychiatric facility or a hospital or clinic. How would you go about creating an environment for policy change here? Some core questions should guide you.

First, what key stakeholders are in the initial stakeholder group (i.e., those most likely to feel the strongest need for the policy)? Remember, it is essential that stakeholders are identifiable and represent a clear position on this topic. Can you identify both internal and external stakeholders?

Are they organized around various professional lines within your organization? How do you begin to create a shared view among these stakeholders? As you begin to broaden the network—an increasingly collaborative one—which groups should be brought into the discussion? Let us give you an example:

The human resource specialists in your organization will need to be involved at some point in creating a policy about the elimination and reduction of workplace violence. Should they, however, be in your initial set of stakeholders? Why or why not? to understand Friedman (2007) correctly, to put patients’ health and satisfaction first, the hospital needs effective leadership at the top and from its professional nurses. To prevent violence in the workplace, nurses need to strive to be as authentic in their patient contact as possible and to avoid detached impersonal interactions (Carlsson, Dahlberg, Ekcbergh, & Dahlberg, 2006). The case study hospital provides considerable avenues of reward for individual nurses and other staff members to advance themselves and stand out as innovative, which helps mitigate the tendency for workers to herd, that is, to avoid developing themselves and improving the institution for the sake of togetherness with selected coworkers (Friedman, 2007). The case study hospital does provide a psychiatric nurse practitioner on staff and onsite one day per week as an employee assistance provider. Having this person onsite provides an opportunity for hospital staff to be counseled on becoming less reactive to emotionally intense environments, as recommended by Friedman (2007). Healthcare organizations also need to provide referral information, such as to employee assistance programs or clinicians experienced in trauma care, for employees who may exhibit more serious and persistent reactions to perceived violence and aggression (Bernstein & Saladino, 2007). Nurses and nursing organizations should become more familiar with national guidelines and recommendations and persuade their hospitals to adopt and implement them. The process for nurses is to focus more on taking responsibility for their own condition, practice self-regulation, and have a wide repertoire of responses to stressful situations. Although this does not guarantee that violence will be avoided, it does make it less likely to happen and makes nurses better able to keep it in perspective. Friedman (2007) described this as being able to turn down the dial or volume.

Nurses need to be just as effective in managing toxic emotional environments as in handling toxic chemicals and infections. Nurses’ interpersonal effectiveness is increased when they look for and support strengths in others. Postincident debriefing helps transform the experience into a team building and learning opportunity.

Leaders should involve all staff and review events, including what precedes and follows an incident. 61 Case Study CASE STUDIES involved to reach a broad agreement about the issues that define the policy itself.

Case Study References Bernstein, K. S., & Saladino, J. P. (2007). Clinical assessment and management of psychiatric patients’ violent and aggressive behaviors in general hospital. Medsurg Nursing, 16 , 301–309. Carlsson, G., Dahlberg, K., Ekcbergh, M., & Dahlberg, H. (2006). Patients longing for authentic personal care: A phenomenological study of violent encounters in psychiatric settings. Issues in Mental Health Nursing, 27, 287–305. Farrell, G. A., Bobrowski, C., & Bobrowski, P. (2006). Scoping workplace aggression in nursing: Findings from an Australian study. Journal of Advanced Nursing, 55 , 778–787. Friedman, E. H. (2007). A failure of nerve: Leadership in the age of the quick fix . New York, NY: Seabury. Love, C. C., & Morrison, E. (2003). American Academy of Nursing expert panel on violence policy recommendation on workplace violence (adopted 2002). Issues in Mental Health Nursing, 24 , 599–604. Swanson, J. W., Van Dorn, R. A., Swartz, M. S., Smith, M., Elbogen, E. B., & Monahan, J. (2008). Alternative pathways to violence in persons with schizophrenia. The Role of Childhood Antisocial Behavior, 32 (3), 228–240. The Joint Commission. (2008, July). Behaviors that undermine a culture of safety. Retrieved from http://www.joint commission.org/assets/1/18/SEA_40.pdf U.S. Department of Health and Human Services. (2002). Violence: Occupational hazards in hospitals (Document #2002-101). Cincinnati, OH: National Institute for Occupational Safety and Health. U.S. Department of Labor. (2004). Guidelines for preventing workplace violence for health care & social service workers (OSHA 3148-01R). Washington, DC: Occupational Safety and Health Administration. Now are the more difficult questions:

■ What expertise is needed to make such a policy change? ■ What kinds of facts (someone has to gather the data in a systematic way) need to be gathered? ■ Are we discussing violence between patients and those providing medical services, or violence among fellow professionals within the organization? ■ What kind of violence and danger are we discussing here—physical or verbal violence, or both? ■ What about safety issues (including other types of danger to employees and patients)? ■ Would you agree that an emergency room might see these questions a bit differently from those handling financial claims (although both have real needs)? ■ How do you build expert power? Who shares it, and who might be expert in defining these issues over time?

As you create the case, think about developing it in two stages: the initial definition of the issues (expertise), and who needs a seat at the table (stakeholders) both inside and outside the organization. The second stage is writing and defining the policy. If the issue is defined well by all the stakeholders, the delineation of the necessary expertise of workforce violence will become a shared view among the stakeholders. Then, and only then, can one move to the writing of a policy about dealing with workplace violence. Do all the stakeholders need to be involved in writing that policy? We suggest that is not necessary for those 62 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists CASE STUDIES 63 © Anthony Krikorian/Shutterstock SECTION 2 Population Health CHAPTER 4 Population Health Care: Access, Cost, and Quality CHAPTER 5 Global Health: A Vision for Action CHAPTER 6 Mental and Behavioral Health © Anthony Krikorian/Shutterstock Population Health Care:

Access, Cost, and Quality Marie Truglio-Londrigan and Sandra B. Lewenson OBJECTIVES ■ Understand nursing’s historical role in primary health care and care of vulnerable populations. ■ Discuss factors that have the potential to facilitate vulnerability. ■ Examine the relationship between vulnerability and disparity. OVERVIEW Vulnerability and living in a state of vulnerability have been experienced by individuals, families, communities, and populations over time. The strategies developed to improve the health of vulnerable populations, such as political advocacy and legislation, have evolved. To illustrate this unfolding evolution, this chapter has been developed from a historical to a contemporary perspective. The historical perspective highlights the work of nurses with vulnerable populations as these nurses engaged in political advocacy. It shows the work of one local rural community in upstate New York during the late 19th and early 20th centuries that joined forces to provide healthcare access, specifically nursing care, to those who typically lacked services. The more contemporary aspect of this chapter introduces vulnerability and its complexity as it is understood today, including what factors facilitate and sustain these vulnerabilities that lead to disparities. It also addresses the political advocacy required to assure and ensure access to care, as well as improve quality and limit cost. An interview with a contemporary public health nurse illustrates how public policy initiatives influence care delivered at the local level. This interview demonstrates how politics and policy play a role in how programs are developed, negotiated, and delivered, and, in turn, it addresses the health needs of vulnerable populations. (continues) 65 CHAPTER 4 ▸ Lessons from Nursing History on Vulnerability, Disparities, and Political Advocacy In 1922, noted nursing leaders and public health nursing activists Lavinia Dock and Fannie Clem - ent described how a pioneer rural nursing asso - ciation was started by a Johns Hopkins nursing school graduate, Ellen M. Wood, in the northern region of Westchester County, just north of New York City. This new service that began in 1898 provided families living in the northern reaches of the county, which is now considered a sub - urb but then was a rural setting, access to much- needed healthcare services. These services were not readily available because of geographic isola - tion and economic circumstances. The founding of the District Nursing Association of Northern Westchester County (DNA) pre-dated the start of the American Red Cross Rural Nursing Service, which began in 1912 and would later bring pub - lic health nursing to the far reaches of American life, where access to care was at a minimum and vulnerability was at a premium.

Wald’s Work This was not an entirely new concept, but it is a good example for understanding the relation - ship between the lack of access and the politics of health. Noted public health leader Lillian Wald had already established primary health - care services in 1893 on New York City’s Lower East Side at the Henry Street Settlement, bringing vital nursing services to immigrant populations who came to New York seeking a better way of life (Keeling & Lewenson, 2013). It was Wald who recognized that all citizens, whether in the crowded urban environment or in isolated rural areas, required healthcare services. She started the visionary American Red Cross Rural Nursing Service in 1912 and called for addi - tional educational training for public health nurses, in both urban and rural communities (Keeling & Lewenson, 2013). Wald also was a leader in advocating for healthcare reforms in New York City, effecting local laws to include placing school nurses in public schools, estab - lishing playgrounds where children in crowded urban settings could play, and supporting ten - ement laws to protect the health of people who lived in unhealthy conditions. In addition, Wald and many of her colleagues at the Henry Street Settlement, including Lavinia Dock, advocated for women’s suffrage to pro - tect the health of the public (Lewenson, 1996).

Dock called for nursing professionals “to look at social and political problems and include so - cial reform among their professional obligations” (Lewenson, 1996, p. 144). For many nurses during this period of social activism, “nurses’ concerns with injustices in the world rendered their political involvement unavoidable” (Lewenson, 1996, p. 150). The late 19th and early 20th centuries were a time of professional advancement, polit - ical advocacy, and local commitment to better - ing health care for populations. The women in northern Westchester County were part of this ■ Explore the relationships among ethical norms, ideas, values, and beliefs related to the public policy agenda. ■ Describe how nursing ideas, values, and beliefs play a role in setting the policy agenda. ■ Consider the role that politics, policy, and law have in protecting the rights of vulnerable populations. OBJECTIVES (continued) 66 Chapter 4 Population Health Care: Access, Cost, and Quality progressive movement and led healthcare reform efforts in their community.

Ellen Wood and the Use of Political Advocacy The Wood family had a long history of caring for their rural neighbors prior to Ellen Wood’s entrance into nurses’ training at Johns Hopkins Training School for Nurses. Her brother, Holling - sworth Wood, wrote about his sister, “she decided to experience the training then given to nurses in order to take the best possible care of her neighbors” (District Nursing Association of Northern Westchester County [DNA], 1948, p. 13). When Ellen Wood graduated in 1896 * she returned home and brought the nursing skills she learned at Johns Hopkins to her neighbors.

Her brother wrote, “At first her daily rounds were made on foot, but soon her circle widened as cases of sickness in the remoter county districts came to her knowledge, until presently a horse and buggy were needed to take her to her pa - tients” (DNA, 1948, p. 14). In these early years, Wood provided skilled nursing care and taught families how to care for themselves in her ab - sence. Her work was considered “instructive, preventive, and social service work” (DNA, 1948, p. 14). When the Spanish-American War broke out in 1898, Wood volunteered to serve and was as - signed as superintendent of nurses at the Fort Hamilton Army base located in Brooklyn, New York. The Spanish-American War lasted less than a year, starting on April 25, 1898, and ending with the signing of Treaty of Paris on Decem - ber 10, 1898. Wood’s work in the American Red Cross continued following the war. She served on a committee to establish an Army Nurse Corps, something that professional nursing leaders also advocated. Wood worked alongside nursing lead - ers like Mary Adelaide Nutting, Anna Maxwell, Irene H. Sutliffe, and Isabel Hampton Robb in their efforts to have nursing recognized in the military. These leaders found support from sev - eral social-minded women who supported nurs - ing’s efforts in this area, including Mrs. Winthrop Cowdin, who later helped Wood establish the rural nursing service in their upstate commu - nity (Dock & Clement, 1922). With the support of her family and friends, Wood went on to begin the DNA following the war. The women began the DNA with $250, which were the funds that remained after their short-lived Red Cross Auxiliary that they started to support the local men who fought in the Spanish-American War.

Four committees gathered the needed equip - ment either through loans or purchases to sup - port this new endeavor. They collected items such as hot water bags, rubber sheets, sheets, towels, diapers, ice caps, thermometers, soap, Vaseline, bandages, and other items that were needed for care in the home. They provided instruction for home care to practical nurses and arranged for a “special nurse” from New York City to come to their community when needed (DNA, 1948, p. 15). The organizers of the DNA also asked community members to join by paying a $1 annual membership fee. These dues, along with other fundraising activities, donations, and fees charged for nurses’ visits, financed the growth of the organization. In ad - dition, money from two insurance companies— Metropolitan Life Insurance Company and John Hancock Insurance Company—paid for nursing services for their policyholders. For those who could not pay, the DNA provided services free of charge. The DNA organizers believed that trained nurses needed to bring health care to their rural communities and spoke highly of their pioneer - ing effort. They acknowledged the challenges they faced when starting the association and recognized that although district nursing ex - isted already in cities like Boston, New York, * In an email dated February 28, 2013, archivist Marjorie Kehoe at Johns Hopkins University wrote that Ellen Wood graduated in 1895 and received postgraduate training in obstetrical nursing in 1896. Lessons from Nursing History on Vulnerability, Disparities, and Political Advocacy 67 Auxiliary during the Spanish-American War in 1899, and then again when they lobbied in Washington, DC for the establishment of an Army Nurses’ Corps (Sarnecky, 1999). They were accustomed to working toward provid - ing access to care, whether on the battlefield or in the civilian community, and sought sup - port from organized nursing, local boards of health, other healthcare professionals, and in - surance companies. The history of the DNA shows how nurses in the past responded to primary healthcare needs, collaborated intra- and interprofession - ally, and recognized the value of political advo - cacy for that care. This narrative about the 1920s era captures how nurses have responded to the needs of vulnerable populations on a local level and perhaps can help us shape how we consider the advocacy role that nurses continue to have in the 21st century. It also shows the collabo - rative nature of nurse advocates as they joined the work of rural and urban efforts (DNA and Henry Street Settlement, respectively). When a nurse was needed to care for a young camper at Henry Street’s camp in the rural Westchester County, the urban settlement house contacted the DNA in Katonah for aid: Late one summer evening a call came from Henry Street Settlement asking if it were possible to send a nurse to their camp at Secor’s Lake where a boy had been taken very ill. There was no nurse, the camp doctor had gone to New York, and there was no night train. The need was urgent and Katonah was the only point of contact because there was a visiting nurse there. It took some time to locate the camp, but at last the livery man was awakened and the willing nurse set off with the livery team in a violent thunder storm. The picture she found was a gloomy one.

The boy had been removed to a vacant barn for fear of contagion. The nurse stayed for hours doing all she could for his comfort, but the next day he was Buffalo, and Baltimore, none yet existed in ru - ral communities. These women believed, like other reformers of that period, that health care must be learned and that nurses in the commu - nity could implement the ideas of sanitary re - form by teaching the women in the community.

Convincing the community of the need for pub - lic health nurses also meant winning the sup - port of local physicians. Stories about the need to gain support from physicians, who often re - fused to accept their professional nursing col - leagues, include the following from one of the early pioneers, Miss Luquer: I remember sending the nurse to a patient who lived near me. I begged the doctor for his permission. He finally consented. I got the nurse and took her to the neighbor. She made the patient so comfortable that when the doctor called, she thanked him again and again for sending the nurse. He never said a word, but neither did he ever call the nurse again. (DNA, 1948, pp. 20–21) Although it was not always successful in the beginning, the writers of the DNA’s history noted that physicians ultimately became the organization’s “mainstay” (DNA, 1948, p. 21). Without calling the rural communities vul - nerable , the late 19th- and early 20th-century community activists, mostly women, joined forces with early public health nurses to provide care to those in need and to those living in rural northern Westchester County. Like in other rural settings, the lack of adequate roadways, hospi - tals, health departments, and healthcare facilities contributed to the vulnerability of the families in this community. The women who joined forces with Wood advocated for the start of the visit - ing nurses services that Wood and other nurses could provide. These women believed that join - ing people together was key to meeting the needs of those who required care. People must just “go ahead and do it” (DNA, 1948, p. 47). They were used to working together, as demonstrated in their earlier work in establishing a Red Cross 68 Chapter 4 Population Health Care: Access, Cost, and Quality collaboration with local governmental agencies like health departments, school boards, and local Chambers of Commerce to provide such care.

The ability of the activists and the families in the northern Westchester community during the late 19th and early 20th centuries to work together and address the needs of the commu - nity offers insight into today’s need for strong community partnerships, political advocacy for those who need healthcare services, and the recognition of nursing’s role in providing pri - mary health care in rural settings.

▸ The Face of Vulnerability Today Nursing’s history and historical leaders give us pause as we think about how nurses have always played a role in consideration of those most vulnerable. Contemplating that which was documented in the first part of this chapter illustrates some of these leaders and their pioneer work. The iconic image of the nurse climbing removed to a New York hospital where he died. Miss Wald’s letter received later spoke with appreciation of the “link of co-operation” which brought help to the boy, and relief to the Henry Street Settlement from the Nursing Association of Northern Westchester.

(DNA, 1948, p. 52) Vulnerability can happen in any popu - lation living in urban or rural settings, and it is often compounded by race, class, and gen - der. As this historical example shows, nursing attempted to provide care to vulnerable popu - lations in rural settings and urban settings. The DNA, the American Red Cross Rural Nursing Service, and the Henry Street Settlement on the Lower East Side of New York City are just a few exemplars of how nurses cared for the populations living in the community. Nurses in each of these community-based organiza - tions offered primary healthcare services, such as well-baby classes for new mothers, bedside care in the home for those in need, coordina - tion of care with other healthcare providers, and REFLECTION AND DISCUSSION Before you continue reading this chapter, consider the work of these past nursing leaders and engage in the following reflection and discussions:

1. Describe the communities and the population living within these communities t\ hat Lillian Wald and Ellen Wood served. 2. What were the major needs of the population during that time? Is there evidence of their vulnerability and disparities? 3. Were services available and accessible? 4. What were the reasons for the limited availability and access to these needed services? 5. What role did geography and economics play at the time? 6. What skills did these past nursing leaders possess and what can we learn from them for our contemporary practice? 7. What questions do you suppose these nursing leaders ask during periods of quiet self-reflection? 8. How do you suppose these past nursing leaders engaged others in their quest to develop services that were both available and accessible? 9. How did they develop and expand opportunities for those they served? 10. How is this related to social activism and social justice? 11. Considering the stories from the past, what were the core factors that facilitated these nurses in these transformational endeavors? The Face of Vulnerability Today 69 Taking a Closer Look at Vulnerable Populations Public health initiatives throughout the 20th century made strides in addressing vulnerabil - ity. Yet, despite these strides, there are still “vul - nerable populations left behind” (Institute for Alternative Futures, n.d., p. 8). Some of these identified populations are as follows: high-risk mothers and infants; people who are chronically malnourished, homeless, ill, or disabled; people who are living with human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) (including pediatric AIDS cases); people who abuse alcohol and drugs (includ - ing fetal alcohol syndrome and crack babies); people with health problems caused by chemical exposures; people who are mentally ill; veterans who suffer from posttraumatic stress disorder (PTSD); abusive families and relationships; gays and lesbians who suffer from discrimina - tion; foster youth who are aging out of the foster care system; prisoners; and American Indians (Institute for Alternative Futures, n.d. pp. 8–9). Discussions pertaining to vulnerability focus on individuals, families, and communities—but, the greater focus is on the population perspec - tive. It is important to recognize, however, that individuals make up populations. An individ - ual who is a member of a vulnerable population may not experience vulnerability; conversely, an individual who is a member of a nonvulnera - ble population may be vulnerable due to per - sonal life events (de Chesnay, 2011). Changes in social, economic, and political contexts may create a state of vulnerability for an individual, such as an illness, a loss of a job, a move to an unfamiliar environment, or the loss of a loved one (Benatar, 2013; de Chesnay, 2011; Rogers, 1997). Vulnerability is a complex concept involv - ing life experience that requires understanding of the vagaries of life; an understanding of this complexity can help avoid stereotyping individ - uals and populations. Conversations about who vulnerable peo - ple are and the risk factors that precipitate the openness or exposure leading to vulnerability over rooftops in New York City is a visual im - age to which all nurses have been introduced throughout their education and professional ex - perience. Ensuring and assuring that vulnerable populations have access to the care they need was not only at the forefront of nursing prac - tice in years gone by; it continues to play an im - portant part of the professional responsibility of nurses today. In contemporary practice the re - sponsibility of providers to assure and ensure access is even more crucial along with quality and cost as the trifecta of the “overriding goals of change” (Cox, 2009, p. 217). Vulnerability and vulnerable populations have been defined as “those at greater risk for poor health status and health care access” (Shi & Stevens, 2005, p. 148). There are certain factors that place these individual and pop - ulations at risk. These risk factors are varied and many. A scoping review of the literature by Grabovshi, Loignon, and Fortin (2013) pro - vided evidence that there is the coexistence of multiple risks, frequently noted as multivul - nerability, including: poverty, especially in relation to a specific racial/ethnic minority group; chronic physical or mental illness; lack of insurance; older age; incarceration; immigrant status; limited formal education; living in underserved areas; unemployment; widowed; and homelessness (p. 7). Given the possibility of the multiple risks, Shi, Stevens, Lebrun, Faed, and Tsai (2008) introduced the idea of “risk profiles” (p. 846). These authors noted that the ability to identify risk profiles enables the healthcare system and provid - ers to explore the influence of these multiple risks in certain populations in terms of access to care and use of that care. For example, risk profiles may facilitate an understanding of the presence of a “dose– response relation - ship,” with increasing number of risk factors increasing the likelihood of delaying care (p. 851). In addition, risk profiles allow for vulnerability and disparities to be viewed as the complex constructs that they are, and to consider strategies of a more complex nature inclusive of advocacy and policy.

70 Chapter 4 Population Health Care: Access, Cost, and Quality ineligible to enroll in Medicaid creates long-term economic concerns that add to her stress and ability to recover. Rose’s inability to drive, lack of funds, emotional and physical loss, geographic isolation, and limited social supports and networks pertaining to family and community, as well as the lack of local physical therapy compound her increasing vulnerability and thus her health outcomes. As we will see later in this chapter, Healthy People 2020 considers health services to be one of the determinants of health; it supports the increasingly untoward experience of Rose and the need to advocate for better health services to achieve the desired health outcomes and is concerned with the other factors that compound her increasingly vulnerable state (U.S. Department of Health and Human Services [USDHHS], 2010b).

While this case study is about one individual, this one case is representative of a population in need of care and the risks associated with vulnerability.

Case Study Questions 1. Who is the population that Rose represents? 2. What risks are present that foster Rose’s vulnerability? 3. What disparities can you identify that are evident in health care and health outcomes? 4. What is the potential role for a political advocacy initiative? Mechanic and Tanner (2007) also identified that vulnerability results from “developmental prob - lems, personal incapacities, disadvantaged so - cial status, inadequacy of interpersonal networks and supports, degraded neighborhoods and en - vironments, and the complex interactions of these factors over the life course” (p. 1200) and may arise from challenges evidenced not only in populations but in individuals and communities (de Chesnay, 2011; Mechanic & Tanner, 2007).

The following case study depicts how an older adult, experiencing aging changes, is at greater risk for vulnerability and disparities. It is interest - ing to note that this individual is representative of other older adults and raises the real possi - bility that the population of older adults may be at risk for similar vulnerabilities and disparities. is crucial yet difficult. The tendency is to speak of each factor in isolation—such as age, eco - nomic status, lack of education, loss of a job, and so forth—but they coexist and there is an interplay between and among the risks, enhanc - ing the complexity of being vulnerable. This highlights the multifactorial nature of vulner - ability (Flaskerud & Winslow, 2010). Stevens, Shi, and Faed (2008) further explain this phe - nomenon as being “vulnerable in more than one way” (p. 902). Aday (2003) furthered this conversation by illustrating how vulnerability may be considered from community and indi - vidual perspectives and examines the relation - ships among concepts such as ethical norms and values and policy (social and economic policy, community-oriented health policy, and medi - cal care and public health policy). We, the au - thors of this chapter, suggest that Aday’s use of the term medical care does not adequately repre - sent the expansiveness of the needs of any popu - lation, and we propose that a broader term, such as health care and public policy , would be more useful. In addition, we also suggest that family perspectives are important to consider in any model pertaining to vulnerability. An example of the complexity of vulnerability is noted in the case study about Rose located below . CASE STUDY Rose is a 42-year-old Hispanic female who immigrated to the United States; she is educated at the master’s level and employed as an office worker. Rose had a stroke that left her with left-sided hemiplegia. She finds herself socially and physically isolated from family and friends as a result of living in a rural setting. Rose loses custody of her two children to her ex-husband and finds that her new live-in fiancé of less than 1 year (and her sole caretaker following the stroke) no longer wants to marry her. The economic vulnerability affecting her physical and mental recovery is compounded when she learns that the remaining disability payments from her job, which she can no longer perform, will be gone within a year. Being Case Study 71 3. What disparities can you identify that are evident in health care and health outcomes? 4. What is the potential role for a political advocacy initiative? Differences in Health and Health Care The relationship between vulnerability and healthcare disparities is correlational in that “the people with the greatest health care needs re - ceive the least health care services” (Grabovschi, Loignon, & Fortin, 2013, p. 2). Furthermore, these authors suggest that “people who accumu - late more vulnerability factors are more likely to face health care disparities” (p. 7). Disparities are referred to as “. . . differences in health and health care between population groups” (Ubri & Artiga, 2016, p. 1). The Agency for Healthcare Research and Quality (AHRQ) has reported on healthcare quality and disparities since 2003. The National Healthcare Quality and Disparities Report (QDR) is published annually and provides an overview of the quality of health care received by the U.S. population as well as the disparities in care experienced by different racial, ethnic, and socioeconomic groups. The National Healthcare Disparities Report (2011) highlighted that Americans who experience disparities have the following characteristics:

■ They do not receive care they need, and/or ■ The care they received causes harm, and/or ■ The care was delivered without consideration of the patient’s preferences. ■ The care was distributed in a way that was inefficient and uneven across populations.

It appears, therefore, that there are certain situations that place certain populations at risk, making them vulnerable to disparities in terms of access to care, quality care, and cost of care that ultimately affects disease outcomes, leading to disparities not only in terms of differences in health status between and within populations, but the type of care received by different popu - lations. For example, just because a healthcare service is available to an individual, family, or CASE STUDY A 75-year-old active man named Joe has been living independently in his chosen community for the past 6 months after the death of his wife.

He has been experiencing normal aging changes; as a result, his family notes a difference in his ability to engage in activities of daily living and instrumental activities of daily living. In particular, Joe has not been able to go to follow-up appointments with his primary healthcare provider, attend lunch outings with his friends, or make needed trips to the pharmacy and grocery store. In addition, he has experienced several minor car accidents during his outings that frightened him and caused him to abandon these once enjoyable trips. These aging changes have introduced vulnerability into Joe’s life. This new vulnerability places Joe at risk for negative health outcomes. Furthermore, Joe’s family has been negotiating the health and social networks of Joe’s community to look for social support since he has expressed great sadness over the loss of his wife. They have noted that there is a limited network of support that would permit him to age successfully and safely in place; thus, Joe is vulnerable and at risk.

Case Study Questions 1. Who is the population that Joe represents? 2. What risks are present that foster Joe’s vulnerability? 72 Chapter 4 Population Health Care: Access, Cost, and Quality to die than infants born to women of other races/ ethnicities; higher rates of new HIV in racial and ethnic minorities are noted, except for Asians/ Pacific Islanders (CDC, 2011). Despite the fact that there have been some improvements in the existence of disparities in our nation, there is still work that needs to be done. It is clear that racial and ethnic minority populations often receive poorer quality care and face more barriers in seeking care than do non-Hispanic whites. These disparities can lead to poor health outcomes as well as higher health - care costs. Vulnerability and disparities must be addressed along with attention to quality, as well as the direct and indirect costs. The direct expenses are affiliated with the provision care once accessed and the indirect costs from out - comes such as lost productivity and lost wages (LaVeist, Gaskin, & Richard, 2009).

▸ Vulnerability and Disparities from a Population-Based Perspective As previously noted, progress has been made, but more still needs to be done. A recent National Healthcare Quality and Disparities Report (2015) identifies three aims. These aims act as a guide to improve national disparities and include: 1. Improve overall quality, by making care patient centered, reliable, acces - sible, safe, and focused on achieving meaningful health outcomes. 2. Improve the health of the U.S. population by supporting proven interventions that are based in evidence to address behavioral, social, and, environmental determinants of health. 3. Reduce the cost of quality health care for individuals, families, com - munities, populations, employers, and the government. population does not mean that these potential end users will make use of the service. There - fore, just because a healthcare service is tech - nically available, if it is not accessed and used is it really available? In other words, building it does not mean that they will come. There may be multiple barriers to accessing that health ser - vice such as: geography, limited or no transpor - tation, cost of transportation, limited physical or mental health in terms of the individuals’ abil - ity to travel to the service, lack of awareness of the service, fear due to immigration status, lim - ited literacy, and care deemed not acceptable, satisfactory, or culturally congruent by the in - tended user. There are examples of population-specific disparities. Black and Hispanic populations are less likely than whites to have a usual place to go for health care—thus limited access (AHRQ, 2015). Children with only Medicaid or Children’s Health Insurance Program (CHIP) are less likely to get care when needed compared with children with other forms of insurance (AHRQ, 2014).

Ultimately, delays in care access result in poor outcomes as evidenced by increases in morbid - ity and mortality (Ubri & Artiga, 2016). There is also evidence to suggest that barriers to qual - ity care are significant in households of limited income (AHRQ, 2014, 2015). Certain populations will present with higher rates of certain diseases and health conditions along with poor outcomes. For example, chronic diseases such as heart disease, diabetes, stroke, and cancer are more common for specific pop - ulations such as non-Hispanic blacks, Hispan - ics, American Indians, Alaska Natives, Asians, Native Hawaiians, and Pacific Islanders (Centers for Disease Control [CDC], 2016). Non-Hispanic blacks are also 40% more likely than non-Hispanic whites to have high blood pressure and the rate of diagnosed diabetes is 77% higher among non- Hispanic blacks, 66% higher among Hispanics, and 18% higher among Asians than among non- Hispanic whites (CDC, 2016). Additional examples of health disparities in other populations include infant mortality rates that identify infants born to black women as being 1.5 to 3 times more likely Vulnerability and Disparities from a Population-Based Perspective 73 do collectively to assure the conditions in which people can be healthy” (p. 1). How we as a society assure the health of our public is through the application of a comprehensive public health framework that begins with the three core functions of public health: as - sessment, policy development, and assurance (IOM, 1988) along with the 10 essential pub - lic health services determined by the USDHHS and CDC. A visual image depicting these core functions and essential public health services is seen in FIGURE 4 -1. The question remains: How? How do we as a nation address these challenges in a systematic way that utilizes the best evidence of the time?

Derose, Gresenz, and Ringel (2011) propose that application of our public health framework as a means to address vulnerability and disparities enhances access of services.

Public Health Framework The Institute of Medicine (IOM) (1988) de - fined public health as “what we, as a society, FIGURE 4-1 Three core functions of public health Data from Institute of Medicine. (1988). The future of public health. Washington, DC: National Academies Press; U.S. Department of Health and Human Services. (1994). The public health workforce: An agenda for the 21st century. Washington, DC: U.S. Government Printing Office; Centers for Disease Control and Prevention. (2015). Core functions of public health and how they relate to the 10 essential services. Retrieved from http://www.cdc.gov/nceh/ehs/ephli/core_ess.htm Inform, educat e, and empo wer people about health issues .

Mobiliz e communit y par tner ships to identify and sol ve health pr oblems .

De velop policies and plans that suppor t individual and communit y efforts.

Monit or health status to identify communit y health pr ob lems.

Diagnose and in vestig ate health pr oblems and health hazar ds in the communit y. Enf orce la ws and r egulations that pr otect health and ensur e safety.

Link people to needed pers onal health ser vices and ensur e the provision of health car e when otherwise unav ailable.

Ensure a compet ent pub lic health and pers onal healthcare wo rkforc e.

Ev aluat e effectiv eness , accessibility , and quality of per sonal and population-based health ser vices .

Re sear ch ne w insights and inno vative solutions to health pr oblems .

Assessment P olicy de velopment and planning Thr ee cor e functions of pub lic health Assurance 74 Chapter 4 Population Health Care: Access, Cost, and Quality Social Factors Social factors are not all-inclusive but offer some evidence as to the strong influence of so - cial determinants on vulnerability. Shi, Stevens, Faed, and Tsai (2008) stated that the healthcare professions are now understanding the impact that “social position and social class, racism and discrimination, social networks, and other more relational community factors have on popula - tion health” (p. 43). And, Carthon (2017) stated that “racial and ethnic minorities in the United States have endured long-standing health dis - parities” (p. 3). Furthermore, factors that have the poten - tial to facilitate vulnerability—such as education, income, occupation, social networks, and social support—correlate with health outcomes. These social determinants of health have been posi - tively associated with employment and higher paying jobs with benefits that result in favor - able health outcomes (Moscou, 2017). This has been seen over time. One example can be found in the work of Carthon (2011) in which the au - thor presented a historical study of the physi - cal and social environments of blacks in early 20th-century Philadelphia. In what would fit under the description of today’s Healthy Peo - ple 2020 social determinants of health, the black community was faced with economic hardships, housing shortages, insufficient toileting, lack of clean water, lack of educational opportuni - ties, and limited social relief. This community banded together to address these issues through community activism. They organized the Little Mother Club, which offered health education to childbearing women as a means to reduce in - fant mortality in the city.

Health Services Health services, as a determinant of health, refers to both access to and quality of healthcare ser - vices (USDHHS, 2010c). Vulnerable populations include those who are “not well integrated into the health care system because of ethnic, cultural, economic, geographic, or health characteristics” (Urban Institute, 2010, para. 1). Because of this Carrying out an assessment is a systematic process that includes the gathering of infor - mation about individuals, families, communi - ties, systems, and the population. Information is gathered by interview and observations; in - formation can also be retrieved from large da - tabases about the population of interest. These large databases offer a wide variety of informa - tion such as vital statistics, as well as morbidity, mortality, incidence, and prevalence rates, just to name a few. Those working with populations may analyze this information over a period of years searching for trends in specific populations.

This analysis will offer information about which populations are exposed to risks, vulnerability, and disparities. In addition, assessment includes details about the history of the community, ge - ography, and environmental hazards and ben - efits (Truglio-Londrigan & Lewenson, 2017).

Factors and Precipitators Leading to Potential Vulnerability An important part of this population-based as - sessment is the gathering of information about the determinants of health that include those factors or precipitators that can place individu - als and the population at risk for being vulnera - ble and thus determine their health—as well as their part of the vulnerable risk profile. These categories, as identified in Healthy People 2020, include social factors, health services, individ - ual behavior, biology and genetics, and policy making (USDHHS, 2010a). Social factors, as determinants of health, are subdivided into social determinants and physical determinants. Some examples of so - cial determinants include the following: avail - ability of resources; social norms and attitudes, such as discrimination; crime and violence; so - cial support; social networks and social interac - tions; socioeconomic conditions; transportation; and safety. Examples of physical determinants include the following: the built environment, housing, and environmental exposure to toxic substances (USDHHS, 2010b). Vulnerability and Disparities from a Population-Based Perspective 75 she is experiencing, age plays a factor because she is a mother of two young children and is no longer able to care for them due to her disabil - ity. As a result, she faces a change in custody.

According to Aday (2003), “People are more or less vulnerable at different states of their lives” (p. 54). For example, older adults experience normal aging changes (Smith & Cotta, 2012) and an increase in the incidence of chronic ill - ness (Federal Interagency Forum on Aging-Re - lated Statistics, 2012). These alterations in health may precipitate vulnerability along with the po - tential for negative health outcomes.

Policy Making Finally, policy making, as a determinant of health, may have an impact on health outcomes. For example, increasing taxes on tobacco sales may correlate with decreased sales of cigarettes, or laws may facilitate greater safety and a decrease in injury rates (USDHHS, 2010g). Another ex - ample shows how changes in political leader - ship in government can affect advocacy and the health of the vulnerable. The 2017 budget proposed by the Trump administration threat - ens to cut funding for specific programs. Meals on Wheels, a program that provides food to the elderly in their homes; Supplemental Nutrition Assistance Program (SNAP), a program that provides food for children; and Planned Parent - hood, a program that provides women’s health care are just a few examples of how policy on the national and state level can potentially af - fect the most vulnerable in our society (Paletta & Costa, 2017). The importance of health deter - minants as risks or precipitators of vulnerability in individuals or populations cannot be under - estimated as nurses and other healthcare pro - viders seek to address disparities with the goal of improving health outcomes and in achieving equity. According to the American Nurses As - sociation (ANA) (2015), the integration of so - cial justice is a responsibility of the profession and individual nurses who “. . . must be vigilant and take action to influence leaders, legisla - tors, governmental agencies, non-governmental lack of integration, they are put at further risk.

This lack of access may mean that the population, and the individuals who are part of that popula - tion, may not be aware of needed resources or how to navigate the complex healthcare system.

As a result, they are not able to avail themselves of services, further facilitating their vulnera - bility (Gallagher & Truglio-Londrigan, 2004; Krout, 1986, 1994; USDHHS, 2010d; Williams, Ebrite, & Redford, 1991). As a result, they never were integrated into the system and thus were left behind. An individual who does not have access to needed healthcare services due to bar - riers such as cost, lack of availability, geographic location, or language may be at risk for being vulnerable and present with negative health out - comes (USDHHS, 2010d).

Individual Behavior Individual behavior, as a determinant of health, refers to personal choices regarding diet, physi - cal activity, or the use of substances. The choices a person makes may have a direct implication on health (USDHHS, 2010e). Note that even though public health is generally about care to populations, individuals make up the popula - tion; therefore, individual behavior along with collective behaviors of families and even com - munities are part of a public health framework.

Biology and Genetics Biology and genetics, as a determinant of health, refer to factors such as age, gender, and genetic predisposition (USDHHS, 2010f ), which are not under an individual’s control. There may be sit - uations when these specific factors place an in - dividual or population at risk, thus facilitating vulnerability with potential negative health out - comes. Age, for example, may have an impact on whether an individual is vulnerable, as evi - denced in the case study about Joe and his in - creasing vulnerability and potential for adverse health outcomes. Yet in the case study of Rose, who is only 42 years of age and not typically part of a vulnerable population for the kind of illness 76 Chapter 4 Population Health Care: Access, Cost, and Quality with regard to economics and the never-ending debate regarding the health of our people, it is a question that warrants a courageous and crucial conversation (Patterson, Grenny, McMillan, & Switzler, 2012). Fairman and D’Antonio (2013) speak about this national conversation through - out U.S. history, as seen in debates triggered by Social Security legislation in the 1930s, Medicaid and Medicare in the 1960s, and now the Affordable Care Act (ACA) of 2010 and its proposed repeal. Rogers (1997) discussed how certain fac - tors that lead to vulnerability are nonmodifiable, such as age and gender, and how others, such as poverty, education, and social support, are mod - ifiable. Nurses, for example, with their knowl - edge base, are in a prime position to develop strategies to address these modifiable and non - modifiable factors that may lead to vulnerabil - ity and disparity. According to Benatar (2013), the common response in terms of protecting the health and rights of vulnerable people is through the law. There is, however, conflicting discourse about this very notion of responsibility and ac - countability. Some say the responsibility rests solely with the individual, and others say it is a collective responsibility. This directly impacts politics and the policy agenda. Even if there were agreement that health is a collective responsibility, as argued by Benatar (2013), and if responsibility were carried out through law, the laws themselves do not guar - antee social justices. This is further explicated by Mechanic and Tanner (2007): Federal and state government are more likely to provide assistance to those who are not seen as responsible for their vulnerability, such as children, the blind, disabled veterans, and the elderly. When people are seen as responsible for their life circumstance, such as in the case of substance abusers . . . There is less public compassion and often stigma. (p. 1222) This idea is further supported by Truglio (2017) who put forth the idea that governments organizations, and international bodies in all re - lated health affairs to address the social deter - minants of health” (p. 36).

▸ Political Advocacy toward Health Equity Nurses engage in reflection individually and col - lectively as a professional group as they work with populations towards the elimination of dispari - ties and achieving equity via policy development and assurance . They ask questions such as: Where do we stand, and where does the nation stand?

It is important to ask these questions to clarify and answer them. Courtwright (2008) says, “If we take the social determinants of health seri - ously, we need to look beyond asking whether the conditions that create them are just or un - just and start with the more fundamental ques - tions of whether it is right that some people have worse health care than others” (p. 17). Over the decades, there has been a progressive movement in the work of Healthy People to address this is - sue, as noted in the evolution of its overall goals, where there has been a shift of emphasis con - cerning disparities. Initially, the focus was on the reduction of health disparities, then the focus shifted to the elimination of health disparities.

More recently, Healthy People 2020 introduced the concept of health equity, which is defined as “attainment of the highest level of health for all people. Achieving health equity requires valu - ing everyone equally with focused and ongoing societal efforts to address avoidable inequalities, historical and contemporary injustices, and the elimination of health and healthcare disparities” (National Partnership for Action, 2011, para. 1).

Social Justice and Responsibility Flaskerud and Winslow (2010) invite readers to reflect on and answer the following question:

“Who has the ultimate responsibility for the well-being of the most vulnerable among us?” (p. 298). Given the issues we face as a nation Political Advocacy toward Health Equity 77 together to address the determinants that fa - cilitate vulnerability and disparities. This new way emulates practice from a primary health - care perspective. Truglio-Londrigan, Single - ton, and Lewenson (2017) view primary health care as a philosophical belief about social jus - tice and health equity that nurses and the pro - fession must consider in their work. They base their beliefs on the 1978 saying “Health for All” that was coined by the World Health Or - ganization (WHO) and led to the idea of pri - mary health care as the means of achieving this goal. So strong was this belief that at the Inter - national Conference on Primary Health Care, the Declaration of Alma-Ata was developed and expressed a call to action by all governments and world communities to promote and pro - tect all people (WHO, 1978). This declaration contains 10 points. The fifth point speaks spe - cifically to the idea of primary health care. The declaration formally defined primary health care as follows: Essential health care based on prac - tical, scientifically sound and socially acceptable methods and technology made universally accessible to indi - viduals and families in the community through their full participation and at a cost that the community and country can afford to maintain at every stage of their development in the spirit of self-reliance and self-determination.

It forms an integral part both of the country’s health system, of which it is the central function and main focus, and of the overall social and economic development of the community. It is the first level of contact of individuals, the family and community with the national health system bringing health care as close as possible to where people live and work, and constitutes the first element of a continuing health care process. (WHO, 1978, para. 6) are not always “altruistic” or “value neutral” with regard to different populations who may be “cast out” and “treated prejudicially” (p. 434). This author further states, “. . . if it is the objective of public health providers to safeguard access to healthcare services for all members of society, it is crucial to be attentive to public policy and the powers behind policies creation” (p. 434).

As evidenced by the government in power to - day, questions about the notion of “health for all,” an attribute of primary health care that sup - ports the care of the most vulnerable in society, is now gravely challenged. Do we, as a nation, a profession, and a people, recognize and see a problem? Do we see and understand the issues experienced by vulnerable people as a priority, or do we ne - glect, ignore, or become bogged down in the dogma that reflects the diverse and wide vari - ety of ideas pertaining to social and moral val - ues (Mechanic & Tanner, 2007)? To talk about the policy necessary to address the needs of vulnerable people in this way implies an ap - proach that is paternalistic without regard to the strengths of the vulnerable population in question. Purdy (2004) conducted a concept analysis of the term vulnerable and identified several positive consequences. One had to do with the term open and exposed . Purdy indi - cated that being open and exposed, with regard to vulnerability, may lead to positive opportu - nities. Dorsen (2010) took this a step further in a concept analysis of vulnerability in homeless adolescents and noted positive consequences of vulnerability as the homeless adolescents demonstrated increased resilience, self- reliance, resourcefulness, and innovation. In addition, the providers demonstrated a decrease in neg - ative judgmental behavior and also illustrated a greater understanding of the struggles of this specific population. The possibility exists, therefore, to view vulnerability in a different way, where health - care providers and policymakers see those who are vulnerable as valuable partners working 78 Chapter 4 Population Health Care: Access, Cost, and Quality CASE STUDY A Public Health Nurse’s Story:

Responding to a Local Need This case study is based on the work of a public health nurse, Amanda, who served in the role of director of public health nursing in a county department of health services during the 1990s and early 2000s. While public health nursing focuses on populations, it also works with individuals, families, and communities. By virtue of their practice, public health nurses are connected with governments at local, county, state, and federal levels. This case illustrates how public health nursing practice is often based on legislation that must be enacted at the local level. “It is because federal, state, and local laws require enforcement, that public health nursing can be described as a combination of nursing practice and public health science, including the enforcement of all applicable, local health laws” (anonymous personal communication, August, 7, 2013). Amanda further explained that the U.S. Department of Health and Human Services (USDHHS) and the Centers for Disease Control and Prevention (CDC) guide public health practice, whereas the state commissioner of health and each state’s legislated Standards of Performance for Local Boards of Health guide practice at a local level. The delivery of care at a local level to a vulnerable population of adults who are diagnosed with tuberculosis ( TB) highlights the core functions of public health: assessment, policy development, and assurance.

Population at Risk The population at risk is any resident within the county who had been diagnosed with TB or was at risk for TB. Physicians at the County TB Chest Clinic and the public health nurses related to this specific County Department of Health Services (CDHS) were the main providers of TB care in the community.

The Problem For a long time, Amanda reported, Chest Clinic physicians and the involved public health nurses The notion of full participation in this defini - tion is further defined in the following statement: Requires and promotes maximum community and individual self-reliance and participation in the planning, organization, operation and control of primary health care, making fullest use of local, national and other available resources; and to this end develops through appropriate education the ability of communities to participate.

(WHO, 1978, point 6, section 5) Could this engagement for full participa - tion by vulnerable people be another way of working with our elected officials in the pol - icy arena? As individuals and populations who are living in vulnerable states partner with or - ganizations in the development of strategies to address factors, precipitators, or determi - nants of health that facilitate these vulner - abilities, which may lead to negative health outcomes, is it possible to apply the insights of those considered vulnerable in the identi - fication of priority policy agenda items and how these policies are implemented at local levels? The ability to fully operationalize part - nering with all other parties in a community, while perhaps the goal, is difficult to achieve but not impossible. Using an example from the recent past allows us to view the way a public health nurse operationalized the idea of engaging vulnerable people in political ad - vocacy for better healthcare outcomes by es - tablishing beginning connections necessary for partnership development with the popu - lation being served. The following case study is from an inter - view with a public health nurse and illustrates the intersection of nursing social responsibil - ity, laws to protect vulnerable people, and con - cern for the population in general, and how standards of care were executed with policies and procedures. Case Study 79 staff to meet the DOT standard, particularly in this county, where there was a significant shift in demographics. This issue spurred an internal assessment to find out what was happening. Conducting the assessment was difficult because the CDHS system was not fully supported by technology, and data mining was impossible. What ensued was a massive chart audit that helped everyone see the changing demographics and created the context for collective reflection. Based on this audit, policies and staffing needed to change, as did the competencies of the staff and the involvement of key individuals living in the communities that were reflected in the vulnerable population being served.

Solution Amanda, in concert with the CDHS health officer, applied for a grant that the CDC made available to state departments with demonstrated need.

The previous audit outcomes allowed her to be successful in demonstrating need; the grant was awarded, and monies to enhance the department’s abilities were received. This financial resource permitted the CDHS to hire additional staff, purchase necessary equipment, and provide the public health nurses with culturally accurate educational materials for the target population of TB cases and their contacts. Amanda reported that these grant monies allowed the CDHS Office of Public Health Nursing to add bilingual nursing or outreach staff to meet the language needs of the population, have a designated car for DOT home visits, provide annual updated and culturally sensitive TB Standards of Care education to all involved public health personnel, and enhance involvement of the communities and populations being served.

Outcome As a result of these population-based interventions, the treatment policies changed. DOT was provided daily by culturally sensitive staff, community understanding and involvement increased, TB treatment compliance increased, and the incidence of MDR-TB conversions decreased. These positive outcomes resulted in continued grant funding from the state, thus ensuring continuance of care.

The cycle of public health assessment, policy development, and assurance had come full circle. were able to deliver the required care and meet standards of practice. Over time, however, there was a change in the population served; this was not recognized by the public health nurses and other professionals, resulting in diminished treatment compliance, reduced numbers of optimal outcomes, and increased risk of multidrug-resistant tuberculosis (MDR-TB). Demographic trends showed the county was changing due to increased migration from Korea, China, South America, and Central America. This created a shift from a mostly white, English-speaking population to a more culturally diverse population, with English as a second language or no English at all. This was compounded by the fact that these diverse populations often had a different cultural understanding of TB and its treatment. In addition, if a particular person was undocumented, he or she saw the public health nurse as a government person and wanted to avoid contact. Although the population had changed, Amanda reported, the available public health nurses were still primarily white and English speaking. They sensed these shifts in demographics, but it had happened gradually, so its significance was not apparent. They were not culturally aware of what these shifts meant in terms of how TB care delivery needed to be changed. Strategies for the delivery of culturally competent and congruent care would be needed if positive health outcomes were going to be sustained. Instead, the nurses recognized only how increasingly difficult it was to meet client needs, obtain compliance, achieve standards of care, and reach positive outcomes. Simultaneously, additional standards of care had been developed by the State Department of Health—Standards of Care for Tuberculosis Disease and Latent TB Infection—that stressed the use of directly observed therapy (DOT ) for all pulmonary and laryngeal TB cases. DOT means that a public health nurse, or a delegate, would meet with each TB patient to observe the self-administration of prescribed medications. As this standard was incorporated, each TB program throughout the state did its best to meet the DOT standard; however, it became apparent that provider agencies with a significant number of TB cases needed additional CDC funding or additional 80 Chapter 4 Population Health Care: Access, Cost, and Quality as they engaged in the role of political advocacy for this vulnerable population.

a. Identify the time in history and describe what the presiding issue was and what the population was experiencing with regard to the issue. b. How did the nurses of that time exemplify the role of a political advocate for the population? c. How did the nurses of the time engage in political advocacy? 2. As a group, discuss the various vulnerable populations that you have encountered in your practice.

a. Identify the population. b. Gather information about the population and the risks that make them vulnerable and the specific disparities they experience. c. What are the specific issues that this population presently face? d. How would you describe their access to care, quality of care, and the economic burden of that care? e. How can you advocate politically for this particular population with regard to the issue? f. How can you engage and partner with the population in political ad - vocacy, working together to address their vulnerability and disparities?

Provide specific examples. g. How does partisan politics affect the care society provides to vulnerable populations? References Aday, L. A. (2003). At risk in America: The health and health care needs of vulnerable populations in the United States (2nd ed.). San Francisco, CA: Jossey-Bass. Agency for Healthcare Research and Quality. (2011). 2011 national healthcare quality and disparities report . Retrieved from https://archive.ahrq.gov/research/findings/nhqrdr /nhdr11/key.html Agency for Healthcare Research and Quality. (2014). 2014 national healthcare quality and disparities report. Retrieved from https://www.ahrq.gov/research/findings/nhqrdr /nhqdr14/index.html ▸ Conclusion There is a danger when making a list of vulnera - ble populations. Such a list gives the impression that the list is complete. The list presented earlier in this chapter is not complete and is provided as a demonstration of the breadth of this issue.

There is also a danger in accepting the status quo, and believing the government accepts the responsibility to support the vulnerable popula - tions among us. Yet, this is not always true, and even knowing the scientific evidence that sup - ports a more socially just practice, nurses and healthcare providers must become clearer on who these populations are and what needs to be done—socially, economically, and politically— to ensure and assure that the care is provided. Vulnerability can be assigned to populations, and it can occur in individuals. There is a rela - tionship among factors that lead to vulnerabil - ities. Using various examples from history and contemporary times, we see an evolving over - arching public health framework in which we can explore the ideas surrounding vulnerabil - ity, disparity, quality, cost, advocacy, and pol - icy. Nurses have responsibly acted upon the needs of vulnerable people over the past 100 years. From Wald’s leadership in both urban and rural settings to nurses’ responses today as they meet the needs of vulnerable people, this commitment continues. This chapter illustrates how nurses have served and must continue to serve the public in addressing vulnerabilities and disparities through political advocacy while ad - dressing cost and quality. In this way, it is hoped that the Declaration of Alma-Ata phrase “Health for All” can be realized.

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