Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care

Maria Hewitt and Joseph V. Simone, Editors

National Cancer Policy Board

INSTITUTE OF MEDICINE and

COMMISSION ON LIFE SCIENCES, NATIONAL RESEARCH COUNCIL

NATIONAL ACADEMY PRESS
Washington, D.C.



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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care Maria Hewitt and Joseph V. Simone, Editors National Cancer Policy Board INSTITUTE OF MEDICINE and COMMISSION ON LIFE SCIENCES, NATIONAL RESEARCH COUNCIL NATIONAL ACADEMY PRESS Washington, D.C.

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care NATIONAL ACADEMY PRESS 2101 Constitution Avenue, N.W. 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 Board responsible for the report were chosen for their special competences and with regard for appropriate balance. Support for this project was provided by the National Cancer Institute; the Centers for Disease Control and Prevention; the American Cancer Society; American Society of Clinical Oncology; Amgen, Inc.; Abbott Laboratories; and Hoechst Marion Roussel, Inc. The views presented in this report are those of the Institute of Medicine National Cancer Policy Board and are not necessarily those of the funding agencies. International Standard Book No. 0-309-07191-7 Additional copies of this report are available for sale from the National Academy Press , 2101 Constitution Avenue, N.W., Box 285, Washington, D.C. 20055. Call (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area), or visit the NAP's home page at www.nap.edu. The full text of this report is available at www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at www.iom.edu. Copyright 2000 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 serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care “Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe INSTITUTE OF MEDICINE Shaping the Future for Health

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care THE NATIONAL ACADEMIES National Academy of Sciences National Academy of Engineering Institute of Medicine National Research Council The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Bruce M. Alberts is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. William A. Wulf is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Kenneth I. Shine is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy's purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Bruce M. Alberts and Dr. William A. Wulf are chairman and vice chairman, respectively, of the National Research Council.

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care NATIONAL CANCER POLICY BOARD ARNOLD LEVINE (Chair), President, The Rockefeller University JOSEPH SIMONE (Vice Chair), Medical Director, Huntsman Cancer Foundation and Institute, University of Utah, Salt Lake City ELLEN STOVALL (Vice Chair), Executive Director, National Coalition for Cancer Survivorship, Silver Spring, MD DIANA PETITTI (Vice Chair), Director, Research and Evaluation, Kaiser Permanente of Southern California, Pasadena TIM BYERS, Professor of Epidemiology and Program Leader, Clinical Cancer Prevention and Control, University of Colorado Health Sciences Center VIVIEN CHEN, Epidemiology Section Chief and Professor, Louisiana State University Medical Center, New Orleans SUSAN CURRY, Director, Center for Health Studies, Group Health Cooperative of Puget Sound, Seattle NORMAN DANIELS, Professor of Philosophy, Tufts University KATHLEEN FOLEY, Chief, Pain Service, Department of Neurology, Memorial Sloan-Kettering Cancer Center, New York City THOMAS KELLY, Boury Professor and Chairman, Department of Molecular Biology and Genetics, Johns Hopkins University School of Medicine MARK McCLELLAN, Assistant Professor of Economics, Stanford University WILLIAM McGUIRE, Chief Executive Officer, UnitedHealth Group, Minnetonka, MN JOHN MENDELSOHN, President, University of Texas M.D. Anderson Cancer Center, Houston MONICA MORROW, Professor of Surgery and Director, Lynn Sage Comprehensive Breast Program, Northwestern University Medical School NANCY MUELLER, Professor of Epidemiology, Harvard School of Public Health PILAR OSSORIO, Assistant Professor of Law and Medical Ethics, and Associate Director for Programming, Center for the Study of Race and Ethnicity in Medicine, University of Wisconsin Law School, Madison CECIL PICKETT, Executive Vice President of Discovery Research, Schering-Plough Research Institute, Kenilworth, NJ JOHN SEFFRIN, Chief Executive Officer, American Cancer Society, Atlanta SANDRA UNDERWOOD, American Cancer Society Oncology Nursing Professor and Professor, Health Maintenance Department, University of Wisconsin School of Nursing, Milwaukee FRANCES VISCO, President, National Breast Cancer Coalition, Washington, DC SUSAN WEINER, President, The Children's Cause, Silver Spring, MD We also wish to thank former board members Peter Howley, John Bailar, Jospeph Davie, Robert Day, and Jane Sisk for their contributions to the development of this report during their term of service on the board.

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care Staff MARIA HEWITT, Study Director ROBERT COOK-DEEGAN, Director, National Cancer Policy Board (through August 2000) CARMIE CHAN, Research Assistant ROGER HERDMAN, Director, National Cancer Policy Board (from September 2000) ELLEN JOHNSON, Administrative Assistant

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care Acknowledgments This report brings together the diverse fields of health services research, cancer surveillance, and informatics, and the authors relied heavily upon the contributions of many people with expertise in these areas. Our goal in preparing this report was to address pressing issues related to improving the quality of cancer care, while staying focused on the technicalities of data systems and processes needed to further these quality-related goals. We consulted extensively with experts in the many disciplines covered in this report and are deeply indebted to them. This report emanates from the National Cancer Policy Board (board). The board has a wide range of expertise in, for example, basic research, clinical practice, administration, and patient advocacy. For this report, the board's expertise was augmented by outside experts. Many of these experts were assembled at a workshop in October 1999 at The National Academies to present relevant papers and participate in discussions with the board (see the workshop agenda and list of participants in Appendix B). The board is particularly indebted to Thomas Smith for preparing the charge to the workshop and for his dynamic leadership of the workshop. The entire board active in 1999 was involved in this report 's development, but the authors want particularly to thank four members who made significant contributions: Vivien Chen, Monica Morrow, Diana Petitti, and Jane Sisk. Members of the Board, Arnold Levine, Tim Byers, Mark McClellan, Nancy Mueller, Cecil Pickett, and Susan Weiner, could not participate in this report because they were appointed after it was completed. The report benefited greatly from the inclusion of 10 case studies illustrating how pioneers in monitoring the quality of cancer care are using existing data

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care within their practices or systems of care. We are very grateful to David Lansky of the Foundation for Accountability for helping us identify some of these programs. We would especially like to thank the following individuals for the time and effort they contributed in completing these case studies (listed in order of presentation in the report): Peter Eisenberg, Marin Oncology Associates; Grant Swanson, Kimberly Bergstrom, and Roger Shiffman, OnCare; Jean Owen, American College of Radiology; Gale Katterhagen, Sutter Health Breast Cancer Quality Project; Laurie Skokan, Providence Health System; Jane Weeks, National Comprehensive Cancer Network; Stephen Edge, Roswell Park Cancer Institute; Tim Byers, Colorado Medicare beneficiaries case study; Becky J. Cherney, Central Florida Health Care Coalition; and Monica Morrow, National Cancer Data Base. Kevin Brady, Mary Kaeser, and Dan Miller at the Centers for Disease Control and Prevention (CDC) provided valuable assistance with our review of the National Program of Cancer Registries. Staff at the National Cancer Institute (NCI) were very helpful in providing relevant materials and reviewing sections of the report describing NCI-sponsored programs and research. A special thanks goes to Rachael Ballard-Barbash, Martin Brown, Brenda Edwards, Linda Harlan, Arnold Potosky, and Joan Warren. The document benefited greatly from an open, technical review at the January 5, 2000, board meeting. Here, invited experts had an opportunity to critique an early draft of the report and engage in discussions with the board. Our invited experts included: Joseph Bailes, American Society of Clinical Oncology; Christopher Desch, Medical College of Virginia, Virginia Commonwealth University; Robert Hiatt, Rachel Ballard-Barbash, and Joseph Lipscomb, Division of Cancer Control and Population Sciences, NCI; Nancy Lee, Division of Cancer Prevention and Control, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control; Mitchell Morris, M.D. Anderson Cancer Center; Jean Owen, American College of Radiology; Nancy Riese Daly, American Society for Therapeutic Radiology and Oncology; Edward Sondik, National Center for Health Statistics; Thomas Tucker, University of Kentucky; and Jane Weeks, Dana-Farber Cancer Institute. Board staff were essential to completing this report. Robert Cook-Deegan, the board director, helped develop the open review process and reviewed drafts. Hellen Gelband provided helpful suggestions to improve the draft document. As research assistant throughout the study, Carmie Chan was resourceful and thorough as she located references and completed tables for appendices. Ellen Johnson, the project administrative assistant, was invaluable in planning the workshop, steering the report through Academy procedures, and supporting the board.

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care A number of quality-related projects conducted within the Health Care Services Division of the Institute of Medicine (IOM) provided very important background information for the report, especially in the areas of informatics and computer-based patient records. REVIEWERS This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council's Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the Institute of Medicine and the National Research Council in making the published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and the draft manuscript remain confidential to protect the integrity of the deliberative process. The National Cancer Policy Board wishes to thank the following individuals for their participation in the review of this report: David J. Ballard, Senior Vice President, Health Care Research and Improvement, Baylor Health Care System, Dallas, TX Paul Clayton, Intermountain Health Care, Salt Lake City, UT Holly Howe, Executive Director, National Association of Centralized Cancer Care Registries, Springfield, IL David Lansky, The Foundation for Accountability, Portland, OR Elizabeth McGlynn, RAND Corporation, Health Sciences Program, Santa Monica, CA Ann B. Nattinger, Department of Medicine, Medical College of Wisconsin Edward B. Perrin, Professor, Emeritus, Department of Health Services, University of Washington Although the individuals acknowledged have provided valuable comments and suggestions, responsibility for the final contents of the report rests solely with the National Cancer Policy Board, the Institute of Medicine, and the National Research Council.

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care Contents     EXECUTIVE SUMMARY   1  1   INTRODUCTION   8      Role of the National Cancer Policy Board,   8      Framework of the Report,   10  2   WHAT WOULD AN IDEAL CANCER CARE DATA SYSTEM LOOK LIKE?   11      Well-Established Quality-of-Care Measures,   12      Computer-Based Patient Records,   14      Standard Reporting,   14      National, Population-Based Case Selection,   15      Repeated Studies to Monitor National Trends,   16      Established Benchmarks for Quality Improvement,   16      Data Systems for Local Quality Assurance Purposes,   16      Public Reporting of Selected Aggregate Quality Scores,   17      Adaptability,   17      Protections to Assure Privacy of Health Information,   17  3   HOW ARE HEALTHCARE SYSTEMS MONITORING QUALITY TODAY?   18      Case Studies—Illustrations of the Use of Data to Monitor Cancer Care Quality,   18      Summary,   34

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care  4   THE DATA INFRASTRUCTURE FOR HEALTH SERVICES RESEARCH   37      Linkage of Cancer Registries to Administrative Data,   37      Cancer Registries as a Sampling Frame for Special Studies,   39      Developing Health Services Research Consortiums,   42      Federal Health Surveys and Data,   43      Summary,   45  5   STATUS OF THE CANCER CARE DATA SYSTEM   46      Well-Established Quality-of-Care Measures,   47      Computer-Based Patient Records,   52      Standard Reporting,   53      National, Population-Based Case Selection,   55      Established Benchmarks for Quality Improvement,   63      Data Systems for Local Quality Assurance Purposes,   66      Summary,   75  6   FINDINGS AND RECOMMENDATIONS   76      What Would the Ideal Cancer Care Data System Look Like?   77      How Are Current Cancer Data Systems Meeting the Needs of Healthcare Systems?   78      What Steps Can be Taken to Enhance Data Systems So That They Can Be Used to Monitor and Improve the Quality of Cancer Care?   82     REFERENCES   95     ACRONYMS AND ABBREVIATIONS   105     APPENDIXES    A   Ensuring Quality Cancer Care, Report Summary,   109  B   Workshop Agenda and Participants,   123  C   Summary of Selected Registry-Based Quality Studies,   131  D   Information on Cancer Registries, by State,   141  E   Reporting Requirements, NPCR, NCDB, SEER,   148     INDEX   155