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Improving Healthcare Through Advocacy

A Guide for the Health and Helping Professions

Bruce S. Jansson

Wiley Logo

To Lisa Gebo, who taught us how to be skilled

advocates as she battled breast cancer

Preface

The Goal

For the millions of people who navigate the American healthcare system, there are seven common problems they often encounter:

  1. 1. They cannot finance their care.
  2. 2. They receive care that does not meet widely accepted standards.
  3. 3. They encounter violations of their ethical rights.
  4. 4. They receive care that is not culturally competent.
  5. 5. They fail to receive needed preventive services.
  6. 6. They fail to receive appropriate care for their mental health.
  7. 7. They do not receive care that links their healthcare to the communities where they live.

Despite these deficiencies, existing health literature and textbooks fail to discuss sufficiently how health professionals can become advocates for people with these problems—whether at the case or patient level, or at the policy level. Improving Healthcare Through Advocacy provides the first, detailed, hands-on, step-by step, case advocacy framework (see Chapters and), as well as a companion policy advocacy framework (see Chapter). Each of these frameworks identifies specific tasks of advocates as they provide advocacy interventions, whether at the case or policy levels. Each describes value-clarifying, analytic, influence-wielding, and interactional skills.

Case and policy advocates campaign on behalf of patients or health consumers—or empower them so they can be their own advocates—so that they receive the services, benefits, and rights that they are currently being denied. Advocacy is a highly skilled intervention that often requires the use of influence, assertiveness, and negotiation skills.

Chapters through utilize 118 specific scenarios to describe situations where health consumers often need case advocacy with respect to the seven problems identified previously. Some examples of these scenarios include: Scenario 5.1: Advocacy to Enhance Consumer's Informed Consent (in Chapter, which discusses health consumers' or patients' ethical rights), Scenario 6.1: Advocacy to Help Consumers Learn About Evidence-Based Care (in Chapter, which discusses health consumers' or patients' right to quality care), and Scenario 8.1: Advocacy to Help Consumers Identify PersonalAt-Risk Factors (in Chapter, which discusses preventive services).

The book also provides many vignettes authored by health professionals or patients themselves. These brief scenarios illustrate how professionals engage in advocacy and why patients or health consumers often need them.

The case and policy frameworks are embedded in their respective policy and regulatory contexts because advocates cannot protect the rights of consumers if they are not informed about the myriad laws and regulations that entitle health consumers and patients to specific rights, benefits, and services. These include HIPAA; Medicare, Medicaid, and S/CHIP, the Americans with Disabilities Act, and the Patient Protection and Affordable Care Act of 2010.

Advocacy is also discussed in its organizational context. Advocates often encounter resistance and negative repercussions from their advocacy. I discuss strategies for minimizing these repercussions. Time pressures also can often make advocacy difficult—this book seeks to identify ways healthcare workers can triage patients to determine who most needs advocacy. It includes discussion of how clinics and hospitals can discourage, as well as promote, use of advocacy—and provides strategies for how readers might team with other health professionals to create institutions that welcome and encourage advocacy.

Advocacy is on the upswing in the health services industry due to the prominence of consumerism and evidence-based practice. Some of the most prominent health systems and institutions that promote advocacy across the nation are identified.

Patients and health consumers often need policy advocacy because their care is hindered by defective policies and procedures in organizational, community, and government settings. I discuss how policy advocates can work to make their clinics and hospitals more receptive to advocacy. (Chapter provides exploratory data that suggest health professionals are more likely to engage in advocacy when it is supported by specific organizational mission, culture, and working arrangements.)

For Whom?

In theory, this book is intended for social workers, nurses, public health staff, and residents (who I sometimes call “frontline staff”) because they have more contact with health consumers and patients than many physicians. In practice, this book is intended for every health professional because all of them see patients and health consumers whose needs are not currently met by the health system.

Improving Healthcare Through Advocacy can be used in the classroom where its combination of policy, regulations, advocacy interventions, and specific scenarios provide ideal teaching tools. The book's advocacy frameworks and scenarios can be used for role plays and classroom simulations. Its 118 scenarios describe real-life situations confronted by many patients and health consumers who clearly need the help of an advocate. It can be used in continuing education settings because many health professionals must augment their education in order to learn how to provide advocacy interventions.

Consider this book, then, as a bottom-up approach for improving healthcare that complements and supplements top-down policies such as statutes, regulations, and evidence-based medicine. It makes the case that health professionals have an ethical imperative to provide advocacy—and it offers a hands-on methodology for providing it.

Added Value

Online materials accompany specific chapters in this book at clearly marked places. You may access these materials at www.wiley.com/go/jansson. Also, readers may wish to visit the web site that I am currently establishing for brief updates relevant to this book: http://www.janspan.org.

Acknowledgments

I am grateful to have received assistance from many people. Helpful comments on the manuscript were given to me by Gary Rosenberg, Ph.D., Director of the Division of Social Work & Behavioral Science at Mount Sinai Hospital in New York City; Laura Weil, M.A. Director of the Health Advocacy Program at Sarah Lawrence College; Kimberly Campbell, ACSW, LCSW, Department of Social Work, Ball State University; Iris C. Freeman, M.S.W, Public Policy Consultant with Advocacy Strategy, Minneapolis, MN and Associate Director of the Center for Elder Justice and Policy at the William Mitchell College of Law, St. Paul, MN; Cassandra J. Bowers, Ph.D., School of Social Work, Wayne State University; and Ann W. Banchoff, M.S.W., M.P.H., Program Director of the Office of Community Health of the School of Medicine of Stanford University.

I greatly benefited, as well, from feedback on early drafts from three health professionals: Julie Anne Miller, M.S.W., Director of the Department of Social Work at Huntington Hospital; Charles Mulley, RN, Care Coordinator at Huntington Hospital; and Carlos Sosa, MSW, Clinical Professor at the USC School of Social Worker and Department of Social Work at Huntington Hospital.

I was greatly assisted in researching this book by the late Jennifer Paek, M.S.W., who tragically died before this book came into print. I benefited from her considerable experience in hospital social work and her commitment to vulnerable populations. She collected some of this book's vignettes. She documented that existing health literature has often exhorted health professionals to engage in case and policy advocacy, but failed to provide them with a hands-on advocacy framework. She tracked down many citations.

Min Ah Kim, M.S.W., and a doctoral student at the University of Southern California School of Social Work, located many citations in this book, particularly in Chapters and, as well as helped to develop schematic figures. Erica Lizano, M.S.W, M.P.H, and a doctoral student at the University of Southern California School of Social Work, infused her knowledge of organizational behavior into Chapter, which she coauthored with me. Dr. Dennis Kao, Assistant Professor at the School of Social Work at the University of Houston, coauthored Chapter with me. His considerable experience in advocacy with persons from different racial and ethnic groups proved indispensable.

I am indebted to Professor Sarah-Jane Dodd at the School of Social Work at Hunter College for developing and analyzing exploratory data that I cite in Chapter that suggests that the hospital context powerfully influences the extent that social workers and nurses engage in advocacy. Professionals who work in settings that emphasize collaboration, team practice, and multidisciplinary training sessions are far more likely to engage in case and policy advocacy than other professionals.

I am obliged to many students in a graduate health-policy course at the School of Social Work of the University of Southern California, particularly the class of spring 2009, who gave me useful suggestions about this emerging book. Nadya Hernandez and Shunae Dyce contributed vignettes at the ends of Chapters and, respectively. Thanks to Gina Frierman-Hunt for her fact-checking and location of citations as this book neared completion.

This book is dedicated to the late Lisa Gebo who, at the end of Chapter, contributed a moving personal account of her use of advocacy to battle breast cancer.