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Patients as Policy Actors

Patients as Policy Actors: A Century of Changing Markets and Missions

Beatrix Hoffman
Nancy Tomes
Rachel Grob
Mark Schlesinger
Copyright Date: 2011
Published by: Rutgers University Press
Pages: 322
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  • Book Info
    Patients as Policy Actors
    Book Description:

    Patients as Policy Actorsoffers groundbreaking accounts of one of the health field's most important developments of the last fifty years--the rise of more consciously patient-centered care and policymaking. The authors in this volume illustrate, from multiple disciplinary perspectives, the unexpected ways that patients can matter as both agents and objects of health care policy yet nonetheless too often remain silent, silenced, misrepresented, or ignored. The volume concludes with a unique epilogue outlining principles for more effectively integrating patient perspectives into a pluralistic conception of policy-making. With the recent enactment of the Patient Protection and Affordable Care Act, patients' and consumers' roles in American health care require more than ever the careful analysis and attention exemplified by this innovative volume.

    eISBN: 978-0-8135-5085-5
    Subjects: Health Sciences

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-ix)
  3. Introduction: Patients as Policy Actors
    (pp. 1-16)
    Nancy Tomes and Beatrix Hoffman

    As health care once again returns to the forefront of national attention, this book comes bearing an urgent message: any and all new measures adopted to reform the U.S. health care system must serve patients’ interests. That point might seem so obvious that it hardly needs a volume to elaborate on it. But the harsh reality is that for all the talk of patient rights and consumer choices, Americans’ health care needs have not been well served by the policy-making process in the United States. One of the most puzzling aspects of contemporary U.S. health politics is the patient conundrum:...

  4. Part I Voices of the Silent

    • [Part I Introduction]
      (pp. 17-20)

      The chapters in part 1 ask how health policies might take into account the perspectives of patients who are incapable of speaking for themselves or have special difficulties being heard when they do attempt to speak. Barriers to patient engagement are endemic. Here, these widespread impediments are illustrated by patients as diverse as those in a persistent vegetative state due to brain injury whose family members are reluctantly thrust into advocacy; low-income minority patients whose communication difficulties with physicians undermine their understanding of their diagnoses and treatments and thus inhibit their capacity for mobilization; women giving birth in the United...

    • Chapter 1 Solitary Advocates: The Severely Brain Injured and Their Surrogates
      (pp. 21-42)
      Joseph J. Fins and Jennifer Hersh

      Some of society’s most vulnerable members cannot speak for themselves and depend upon others to serve as their advocates. Infants and children who have yet to become self-determining, as well as infirm and elderly persons who may have lost their autonomy, rely upon the advocacy of others. For them, the notion of “patient as advocate” becomes something of an oxymoron. Theirs is an advocacy by proxy, by surrogate decision makers, who by dint of relationship or obligation step up and help the patient access appropriate care.

      Under these circumstances advocacy is difficult, but it is especially challenging for surrogates of...

    • Chapter 2 Physician-Patient Communication in the Care of Vulnerable Populations: The Patient’s Voice in Interpersonal Policy
      (pp. 43-59)
      M. Robin DiMatteo, Kelly B. Haskard-Zolnierek, Summer L. Williams and Desiree Despues

      Effective communication with their providers is an essential element of health care for all patients. To accept and adhere to prescriptions and treatment recommendations, patients need clear information about their conditions, attention to their questions and concerns, informative explanations about treatment options, support to make the medical decisions that are right for them, and preservation of their dignity and emotional well-being in dealing with the challenges of illness. Unfortunately, in the United States today, these important aspects of care are often denied to economically and socially vulnerable patients—specifically those of low income, ethnic minority status, low education, or low...

    • Chapter 3 Is It Time to Push Yet? The Challenges to Advocacy in U.S. Childbirth
      (pp. 60-82)
      Elizabeth Mitchell Armstrong and Eugene Declercq

      Women in New Jersey in 2007 demonstrated outside the Underwood-Memorial Hospital in Woodbury. They demanded to know why two women had died in childbirth following cesarean sections at this hospital within a fifteen-day period.¹ They sought, at a minimum, the publication of hospital and obstetrician cesarean rates; their efforts garnered regional media coverage and resulted in—very little. The hospital expressed its regret but did not begin publishing its cesarean rates. Ironically, several months after the protest the hospital received a national award for its childbirth services.² The limited impact of the protest was characteristic of the difficulties faced by...

    • Chapter 4 A Pound of Flesh: Patient Legal Action for Human Research Protections in the Biotech Age
      (pp. 83-108)
      Lori Andrews and Julie Burger Chronis

      Daniel and Debbie Greenberg’s son Jonathan seemed healthy at birth, but six months later he was still functioning at a newborn’s level. After many medical missteps, he was diagnosed as having Canavan disease, a fatal genetic disorder. Following the devastating diagnosis, his parents began to mobilize other parents to fund and participate in research to create a genetic test to allow Canavan screening and prenatal testing for the disease.

      In 1987, the Greenbergs convinced geneticist Dr. Reuben Matalon to try to develop a prenatal test for Canavan disease. For years, the Greenbergs provided Matalon with tissue samples from themselves, their...

  5. Part II From Individual to Collective

    • [Part II Introduction]
      (pp. 109-112)

      In the 1960s and 1970s, patient perspectives began to emerge as a more formative influence on U.S. health policy. The rise of social movements and demands for self-determination by formerly powerless groups created fertile ground for activism by patients and health care consumers. Greater attention to patient perspectives was also in part a consequence of emerging public policies explicitly intended to enhance the voice of individual patients, such as state-mandated grievance mechanisms for health insurance and the emergence of patient advocates as legitimate professionals within U.S. medicine. Also, new public policies and programs such as Medicare and Medicaid, though not...

    • Chapter 5 From Outsiders to Insiders: The Consumer-Survivor Movement and Its Impact on U.S. Mental Health Policy
      (pp. 113-131)
      Nancy Tomes

      This chapter represents an attempt to think more systematically and critically about the “patient factor” in policy making by focusing on a particularly important example of change: the impact of the patient empowerment movement on the mental health field. Since the 1970s, so-called consumer-survivors have gained new visibility as expert patients whose voices matter in policy decision making. Although breast cancer and AIDS activism are better known examples of powerful advocacy, the consumer-survivor movement has arguably had as great a policy influence.

      At first glance, this influence seems hard to explain. People with severe mental disorders hardly conform to the...

    • Chapter 6 “Don’t Scream Alone”: The Health Care Activism of Poor Americans in the 1970s
      (pp. 132-147)
      Beatrix Hoffman

      The poor are among the most silent and disempowered of actors in U.S. society, the poor and sick even more so. Yet there have been attempts by poor and sick Americans to change health care policy from below. This chapter looks at one important example: the health care activism of poverty groups in the early 1970s.

      Unlike many of the activist groups discussed in this book, which tend to focus on a single disease, condition, or policy, the National Welfare Rights Organization (NWRO) tried to transform the fundamental nature of the U.S. health care system. It did this by targeting...

    • Chapter 7 The Canary in Gemeinschaft: Using the Public Voice of Patients to Enhance Health System Performance
      (pp. 148-176)
      Mark Schlesinger

      Until March 2006, Larry Welby thought himself healthy. Forty-five years old and hardly ever inside a doctor’s office—even if he did smoke some … and indulge a bit at mealtimes. But then things changed. First there was a cough that just wouldn’t go away, even after Larry found his way to a doctor for some help. After a few weeks, it started getting hard to breathe at all, especially at night. During the next three months Larry went to all sorts of medical specialists, only afterward discovering that his health plan wouldn’t pay for some of them. Even though...

    • Chapter 8 Patient Appeals as Policy Disputes: Individual and Collective Action in Managed Care
      (pp. 177-192)
      Marc A. Rodwin

      Patients and medical consumers often confront powerful, organized actors and institutions who have focused interests.¹ As individuals, patients usually lack comparative resources and clout. However, acting as a group, patients increase their power, expand their choices, and can often affect policy. This chapter recounts the situation that patients-consumers confronted in the 1980s and 1990s when the growth of managed care created problems for them, particularly the denial of services. They could not solve these problems individually; however, through collective action they secured legislation to address them. State legislation created a right for patients to appeal health plans’ denial of services...

  6. Part III How Patients Matter

    • [Part III Introduction]
      (pp. 193-196)

      Forty years ago, it would have been difficult to anticipate—perhaps even impossible to imagine—the extent to which patient voices, actions, and representations have succeeded in changing how health policy is made and how health care is practiced, delivered, and experienced. Yet there has been no systematic examination of the overall impact of patients on the health care system, nor has there been an attempt to define what success means when it comes to patient voice and activism.

      In this section of the book, authors examine the diverse and far-reaching impact patientsʹ perspectives have had on contemporary health policy....

    • Chapter 9 The Power of Us: A New Approach to Advocacy for Rare Cancers
      (pp. 197-214)
      Amy Dockser Marcus

      The estimated 1.5 million Americans diagnosed each year with cancer have a better than ever chance of surviving the disease. The five-year survival rate for cancer diagnosed between 1996 and 2004 is 66 percent, up from 50 percent for cancer diagnosed between 1975 and 1977.¹ Scientists’ growing understanding of the biology of the disease has led to the development of new drugs, such as Avastin and Herceptin. These drugs are not always able to completely eradicate a cancer, but they have dramatically improved the prognosis for many patients.

      Nonetheless, a large and growing number of people with cancer have not...

    • Chapter 10 Patients and the Rise of the Nurse-Practitioner Profession
      (pp. 215-230)
      Julie Fairman

      Patients influence health policy in both subtle and direct ways.¹ In this chapter, I present a subtle case, one in which patients helped legitimize the growth of a new provider in the 1970s, the nurse practitioner. Nurse practitioners positioned themselves as uniquely attuned to what patients wanted—hands-on care that was personal, local, and familiar. The rise of the nurse practitioner profession shows that unanticipated forces—individual patients and nurse practitioners—provided the foundation for transforming part of the health care delivery system from a piecemeal, reductionist model based on disease to one that emphasized primary care with its focus...

    • Chapter 11 A House on Fire: Newborn Screening, Parents’ Advocacy, and the Discourse of Urgency
      (pp. 231-256)
      Rachel Grob

      Dave Wyvill’s son Zach has a genetic disease called glutaric acidemia type 1 (GA1). Had it been detected immediately after birth, the disorder could have been controlled with vitamins and a special diet. Now it’s too late for Zach to be helped by early diagnosis, but his father wants to make sure that others don’t go through the suffering he and his family have endured. “This should not have happened,” says Wyvill. “It shouldn’t happen again to somebody else’s child.”¹ Like other parents turned newborn-screening policy actors, Wyvill experienced an excruciating crisis: irreversible harm to his child from an undiagnosed...

    • Chapter 12 Measuring Success: Scientific, Institutional, and Cultural Effects of Patient Advocacy
      (pp. 257-277)
      Steven Epstein

      In understanding the role of patients in the transformation of health care and the improvement of health, certainly one of the most pressing tasks is to assess just how effective patients have been when they have banded together.¹ The blossoming of patient groups and health movements as political actors has rightly attracted the attention of scholars seeking to understand the significance and consequences of this form of social organization.² The goals pursued by these groups are increasingly diverse, as are the organizational forms they take and the methods they employ. In this chapter, however, I focus on the question of...

  7. Epilogue: Principles for Engaging Patients in U.S. Health Care and Policy
    (pp. 278-292)
    Rachel Grob and Mark Schlesinger

    Patients’ experiences, behaviors, and advocacy strategies are remarkably diverse: the chapters in this volume document this diversity in no uncertain terms. The actors in these pages share status as recipients, surrogate recipients, or potential recipients of care, but their perspectives do not neatly meld into a single patient voice capable of articulating what people want and need from the health care system. The patient’s perspective is not unitary; rather, it is a polyvocal phenomenon that defies easy categorization and straightforward policy response. Given the heterogeneity of patients’ relationships to health, health care, and the policy process, what can be done...

  8. Notes on Contributors
    (pp. 293-296)
  9. Index
    (pp. 297-309)
  10. Back Matter
    (pp. 310-310)