National Academy Press 2101 Constitution Avenue, NW Washington, DC 20418
NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the forum responsible for this report were chosen for their special competencies and with regard for appropriate balance.
This report has been reviewed by a group other than the authors according to the procedures approved by a Report Review Committee consisting of members of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine.
The Institute of Medicine was chartered in 1970 by the National Academy of Sciences to enlist distinguished members of the appropriate professions in the examination of policy matters pertaining to the health of the public. In this, the Institute acts under both the Academy's 1863 congressional charter responsibility to be an adviser to the federal government and its own initiative in identifying issues of medical care, research, and education. Dr. Kenneth I. Shine is president of the Institute of Medicine.
Support for this project was provided by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (Contract No. N01-OD-4-2139, Task Order #15). This support does not constitute an endorsement of the views expressed in the report.
International Standard Book No. 0-309-05683-7
Additional copies of this report are available from: National Academy Press, Lock Box 285, 2101 Constitution Avenue, N.W., Washington, DC 20055. Call (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area), or visit the NAP on-line bookstore at http://www. nap.edu.
Call (202) 334-2352 for more information on the other activities of the Institute of Medicine, or visit the IOM home page at http://www.nas.edu/iom.
Copyright 1996 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America
The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The image adopted as a logotype by the Institute of Medicine is based on a relief carving from ancient Greece, now held by the Staatlichemuseen in Berlin.
COMMITTEE ON CHANGING HEALTH CARE SYSTEMS AND RHEUMATIC DISEASE
JEREMIAH BARONDESS, Chair, President,
New York Academy of Medicine, New York, New York
JORDAN J. COHEN, President,
Association of American Medical Colleges, Washington, D.C.
DEBORAH A. FREUND, Vice Chancellor,
Academic Affairs and
Dean of Faculties,
Indiana University, Bloomington, Indiana
BEVRA HAHN, Professor of Medicine and Chief,
Division of Rheumatology, School of Medicine, University of California, Los Angeles
WILLIAM R. HAZZARD, Professor and Chairman,
Department of Internal Medicine, The Bowman Gray School of Medicine, Wake Forest University, Winston-Salem, North Carolina
DEBRA R. LAPPIN, Senior Vice Chair,
Arthritis Foundation, Englewood, Colorado
MICHAEL R. MCGARVEY, Senior Vice President,
Health Industries Services, Blue Cross and Blue Shield of New Jersey, Inc., Newark, New Jersey
ROBERT NEWCOMER, Professor and Vice Chair,
Department of Social and Behavioral Sciences, School of Nursing, University of California, San Francisco
NAOMI ROTHFIELD, Professor of Medicine and Chief,
Division of Rheumatic Diseases, School of Medicine, University of Connecticut, Farmington
Project Staff
CLYDE BEHNEY, Director,
Health Care Services Division
FREDERICK J. MANNING, Project Director
ANITA ZIMBRICK, Project Assistant
ANNICE HIRT, Administrative Assistant
NINA SPRUILL, Financial Associate
This page in the original is blank. |
Preface
Despite the failure of the Clinton administration's efforts to establish a comprehensive national health care plan, market forces are today driving a radical restructuring of health care delivery in the United States. At the same time, the epidemiology and demography of health care conditions is changing and greater numbers of individuals live comparatively long lives with a variety of severe chronic diseases. Moreover, the needs of these populations are continually changing, as they experience the daily challenges imposed by their disorders as well as facing the need for access to effective primary and preventive care and hospitalization during acute illnesses.
Efforts to control accelerating health care costs were a major goal of the proposed health care reform, and are in large measure responsible for the rapid growth of "managed care" throughout the 1990s. Control of health care costs will be an empty victory, however, if it is achieved by sacrificing the quality of care. In 1994 the Institute of Medicine (IOM) released a White Paper, America's Health in Transition: Protecting and Improving Quality, announcing its intention to promote the development and application of quality assessment tools and to inform consumers, policymakers, and providers of opportunities for and obstacles to achieving high-quality health care.
As part of its quality initiative, the IOM proposed an invitational workshop examining the relationship, if any, between the mode of health care delivery and the outcomes of care for populations with serious chronic illness. The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) agreed to fund the project, understandably suggesting systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) as focal points representative of chronic diseases characterized by major disability, periodic
acute flares, and complex clinical care needs involving generalists, subspecialists, and other care givers as well as requiring major involvement of the patient. The IOM appointed a small oversight committee for this activity and charged it with planning and conducting the workshop and producing a short consensus report for dissemination with the workshop proceedings. Not unexpectedly, recommendations for future research were a particular concern for NIAMS.
It quickly became apparent that there was little in the way of empirical data in the published literature that specifically addressed the effects of variations in the organization and financing of care on the treatment and health status of persons with RA or SLE. The committee thus chose to focus the workshop on recommendations for research to remedy this situation, and structured the workshop around a number of questions likely to be central to that research: What would ideal care look like? What are the best measures of outcomes? How is the subspecialist/generalist interface best managed? What are the current barriers to care, both patient-related and system-related? How easily do various care systems adopt new knowledge (and what kinds of new knowledge are imminent)? What kinds of systems make the best use of resources? What are the long-term implications of various delivery models for research, education, and training? Experts in chronic disease were invited to address these topics, using RA and SLE as their terms of reference wherever possible. Designated "reactors" insured that the committee heard a variety of views, and a small audience of invited guests added still more variety to the discussion engendered by each talk. Subsequent to the workshop, the committee reassembled in private to draw the conclusions and make the recommendations specified in the contract with NIAMS.
As committee chair I am acutely aware of the contributions that the Institute of Medicine staff have made to the success of the study. Special thanks are due to Project Assistants Annice Hirt and Anita Zimbrick, who made our travel and meetings as comfortable and convenient as possible and provided outstanding administrative support both at the meetings and in the painstaking production of the final report. We are particularly grateful to Study Director Rick Manning for his skilled and professional support through all phases of the committee's task.
Finally, I would like to acknowledge the individual and collective efforts of the committee members. It was a pleasure to have worked with this group of busy but unselfish professionals who volunteered their valuable time to share their knowledge and experience with their fellow scientists.
JEREMIAH A. BARONDESS
CHAIR
This page in the original is blank. |
This page in the original is blank. |