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June 2002 (Volume 80)
Bradford H. Gray
Milbank Memorial Fund
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This issue of the Milbank Quarterly includes two special features: the first of several historical essays written for the centennial of the Milbank Memorial Fund and four papers about disability research that were prepared for the Agency for Healthcare Research and Quality.
The issue begins with Mark Schlesinger’s article, “A Loss of Faith: The Sources of Reduced Political Legitimacy for the American Medical Profession.” A decline in medical authority has been evident in public opinion surveys over the past 30 years. The consequences of this decline have been widely manifest in both the health care system and public policy. Leaders of the profession, medical sociologists, historians, and other commentators have offered a variety of analyses and explanations.
Schlesinger’s article makes several contributions to this ongoing discussion. First, he has assembled time-series data (1965–1999) from NORC, Harris, and Gallup on public attitudes about the health care system and its leaders. A useful figure summarizes this information. Second, Schlesinger carefully parses out the competing accounts of the profession’s loss of legitimacy, distinguishing among 13 different threats to the profession’s efficacy, agency, authority, or boundaries. Third, he presents the first empirical research on the relative importance of the competing explanations for the profession’s reduced legitimacy, using data from his own surveys of the American public and congressional staffers. A major aspect of his analytic strategy is to understand how the public’s and the policy elite’s views of the profession differ from each other. The depth of the profession’s problems become apparent in the breadth and centrality of the factors that undermine its legitimacy; they involve doubts about physicians’ competence and altruism and the profession’s political influence.
The second article in this issue is “The Tyranny of Diagnosis: Specific Entities and Individual Experience” by the historian Charles Rosenberg. This is one of a group of historical essays that have been commissioned by the Milbank Memorial Fund to mark its centennial in 2005. Because they discuss changes during the Fund’s existence, these papers are an appropriate commemorative. Their purpose of providing a fresh historical perspective on important contemporary issues also makes them appropriate for these pages, and I am pleased that the Quarterly will have the opportunity to consider several more of these essays for future publication.
Rosenberg’s article addresses a topic that is highly consequential but is taken so much for granted as to become, as he says, invisible: the idea that there are specific disease entities that grow out of specific underlying mechanisms and that thus call for specific responses. The process by which diseases gain social reality is frequently contentious, but it is the consequences of this social reality that particularly interest Rosenberg. His review of the history and uses of disease concepts over the past two centuries shows their power in standardizing different areas of medicine and, hence, patients’ experiences. This shaping power has new force in the modern era of what David Mechanic (1976) has termed “bureaucratic medicine,” with payment systems, practice guidelines, and interprofessional territorial disputes all turning on nosological systems that continue to change for both scientific and political reasons. It is diagnosis, Rosenberg points out, that links individual to system in health care. Technology is increasing our ability to create and modify disease entities that call for a response—elevated blood pressure or PSA levels or low bone densities in postmenopausal women. Rosenberg’s suggestive term, the “iatrogenesis of nosology,” is particularly evocative during the current debate about mammography and what it may or may not detect. Rosenberg shows that we must understand the nature and function of diagnosis itself if we are to understand medicine as a social as well as a technological system.
The next four articles were originally prepared for a 2001 conference on the status of health services research on disability that was sponsored by the Agency for Healthcare Research and Quality (AHRQ). Each of these papers examines a different aspect of this topic and provides both an overview of the current status of knowledge and a perspective on major research needs and opportunities. They are followed by a commentary by Carolyn Clancy, director of the Center for Outcomes and Effectiveness Research at AHRQ, and Elena Andresen of the St. Louis University School of Public Health.
Gerben DeJong and his colleagues review the organization and financing of health services for individuals with disabilities. James Perrin’s article then covers similar territory for children with disabilities, noting the many ways in which their needs differ from those of adults. Both articles argue that people with disabilities have been largely overlooked by health services researchers. Research is needed, however, because of the many practical and policy problems confronting efforts to respond to this growing and heterogeneous population. People with disabilities often have unusually complex needs, may be heavy users of services, and can face frustrating insurance coverage issues, in part because their needs span the fuzzy border between health care and other policy areas (such as rehabilitation, long-term care, and education). By presenting well-organized accounts of the state of our knowledge and the major issues faced by persons with disabilities, their families, and the professionals and organizations that serve them, Perrin and DeJong and his colleagues make abundantly clear that this is an area with substantial opportunities for research.
In their article “Uses of Evidence in Disability Outcomes and Effectiveness Research,” Alan Jette and Julie Keysor focus on how disabled populations have fared in the outcomes and effectiveness movement that has swept through health services research over the past 15 years. They begin by discussing the challenges of trying to think in “outcomes research” terms about persons with disabilities. To illustrate, they consider how well a leading measurement tool used in conventional medical outcomes research—the SF-36—captures the dimensions on which improvement might be sought in disability outcomes research. These dimensions, suggested by Donald Patrick’s health promotion model (Patrick 1997), are the disabling process, the environment, opportunity, and quality of life. With this analysis pointing to serious limitations in conventional outcomes measurement tools, Jette and Keysor conclude by discussing some directions that outcomes research with disabled populations might take, emphasizing the promise of computer-adapted testing and item response theory.
Lisa Iezzoni’s article, “Using Administrative Data to Study Persons with Disabilities,” completes the set of papers from the AHRQ conference. Iezzoni assesses the strengths and weaknesses for disability-related research of a variety of types and sources of administrative data, such as eligibility files for federal disability programs, diagnosis and procedure codes, and different types of claims data. Her paper begins with a useful discussion of the definitional issues regarding disability that complicate both research and policy in this area. Iezzoni’s article is followed by Clancy and Andresen’s comments on challenges and opportunities in disability-related research from the perspective of the Agency for Healthcare Research and Quality.
The final article in this issue was not presented at the AHRQ conference but is related to those papers. “Disability as a Public Health Issue: Findings and Reflections from the Massachusetts Survey of Secondary Conditions” by Nancy Wilber and colleagues reports on findings from a longitudinal study carried out by the Massachusetts Department of Public Health. The public health perspective on disability focuses on preventing secondary conditions among people with disabilities. Wilber and her colleagues studied whether the receipt of various types of medical, preventive, and supportive services by persons with disabilities was associated with development of fewer and less severe secondary conditions. Using original data on both the incidence and consequences of secondary conditions, the authors identified several risk factors—difficulty maintaining weight and exercise, using tobacco and marijuana, and dealing with the experience of being assaulted—that are amenable to public health intervention. Their research points to the value of incorporating attention to disability-related issues in public health research, policy, and programs, as well as the value of bringing a public health perspective to bear on a population whose members are generally considered only in individualistic terms.
Bradford H. Gray Editor, Milbank Quarterly
Mechanic, D. 1976. The Growth of Bureaucratic Medicine. New York: Wiley.
Patrick, D.L. 1997. Rethinking Prevention for People with Disabilities. Part I: A Conceptual Model for Promoting Health. American Journal of Health Promotion 11:257–60.
Author(s): Bradford H. Gray
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Volume 80, Issue 2 (pages 181–184) DOI: 10.1111/1468-0009.00183-i3 Published in 2002
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