ASSESSING THE QUALITY OF CANCER CARE

AN APPROACH TO MEASUREMENT IN GEORGIA

Committee on Assessing Improvements in Cancer Care in Georgia

National Cancer Policy Board

Jill Eden and Joseph V. Simone, Editors

INSTITUTE OF MEDICINE AND NATIONAL RESEARCH COUNCIL OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS
Washington, D.C.
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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia ASSESSING THE QUALITY OF CANCER CARE AN APPROACH TO MEASUREMENT IN GEORGIA Committee on Assessing Improvements in Cancer Care in Georgia National Cancer Policy Board Jill Eden and Joseph V. Simone, Editors INSTITUTE OF MEDICINE AND NATIONAL RESEARCH COUNCIL OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 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 committee responsible for the report were chosen for their special competences and with regard for appropriate balance. This study was supported by a contract between The Georgia Cancer Coalition and the National Academy of Sciences. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project. Library of Congress Cataloging-in-Publication Data Assessing the quality of cancer care : an approach to measurement in Georgia / Committee on Assessing Improvements in Cancer Care in Georgia, National Cancer Policy Board ; Jill Eden and Joseph V. Simone, editors. p. ; cm. Includes bibliographical references. ISBN 0-309-09569-7 (pbk.); ISBN 0-309-54814-4 (PDF) 1. Cancer—Patients—Care—Georgia—Quality control—Measurement. 2. Cancer—Georgia—Prevention—Quality control—Measurement. 3. Cancer—Diagnosis—Georgia—Quality control—Measurement. 4. Cancer—Treatment—Georgia—Quality control—Measurement. 5. Outcome assessment (Medical care)—Georgia. [DNLM: 1. Neoplasms—Georgia. 2. Outcome Assessment (Health Care)—Georgia. 3. Quality Assurance, Health Care—Georgia. QZ 200 A846 2005] I. Eden, Jill. II. Simone, Joseph V. III. National Cancer Policy Board (U.S.). Committee on Assessing Improvements in Cancer Care in Georgia. RC277.G4A87 2005 362.196′994′009758—dc22 2005007665 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2005 by the National Academy of Sciences. All rights reserved. Printed in the United States of America.

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia THE NATIONAL ACADEMIES Advisers to the Nation on Science, Engineering, and Medicine 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. Wm. 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. Harvey V. Fineberg 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. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia COMMITTEE ON ASSESSING IMPROVEMENTS IN CANCER CARE IN GEORGIA Joseph V. Simone (Chair), President, Simone Consulting, Dunwoody, GA Lawrence B. Afrin, Associate Professor of Medicine, Medical University of South Carolina, Charleston, SC Tim Byers, Professor of Epidemiology, Program Leader, Clinical Cancer Prevention and Control, University of Colorado Health Sciences Center, Denver, CO Vivien W. Chen, Director, Louisiana Tumor Registry, Head of Epidemiology Program, School of Public Health, Louisiana State University Health Sciences Center, New Orleans, LA Peter D. Eisenberg, Oncologist, California Cancer Care, Greenbrae, CA Barbara Given, University Distinguished Professor, College of Nursing, Michigan State University, East Lansing, MI Robert Hiatt, Director, Population Science, Deputy Director, University of California San Francisco Comprehensive Cancer Center, San Francisco, CA David Lansky, Director, Health Program, Markle Foundation, New York, NY Benjamin Littenberg, Henry and Carleen Tufo Professor of Medicine and Director of General Internal Medicine, University of Vermont College of Medicine, Burlington, VT Barbara J. McNeil, Ridley Watts Professor, Head of the Department of Health Care Policy, Harvard Medical School, Boston, MA Mack Roach III, Professor, Department of Radiation Oncology, Medical Oncology and Urology, University of California San Francisco, San Francisco, CA Consultant Joseph Lipscomb, Chief, Outcomes Research Branch, National Cancer Institute, Bethesda, MD (until August 2004) Staff Jill Eden, Study Director Roger C. Herdman, Director, National Cancer Policy Board Elizabeth J. Brown, Research Assistant Editor Kerry B. Kemp

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia NATIONAL CANCER POLICY BOARD Joseph V. Simone (Chair), President, Simone Consulting, Dunwoody, GA Ellen Stovall (Vice Chair), President and CEO, National Coalition for Cancer Survivorship, Silver Spring, MD Bruce W. Stillman (Vice Chair), President, Cold Spring Harbor Laboratory, Cold Spring Harbor, NY Jill Bargonetti, Associate Professor, Department of Biological Sciences, Hunter College, New York, NY Timothy Eberlein, Bixby Professor and Chairman, Department of Surgery, Washington University School of Medicine, St. Louis, MO Kathy Giusti, President, Multiple Myeloma Research Foundation, New Canaan, CT Karen Hersey, Senior Intellectual Property Counsel, Massachusetts Institute of Technology, Cambridge, MA Jimmie C. Holland, Chair, Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, NY William G. Kaelin, Professor of Medicine, Harvard Medical School, Boston, MA William W. McGuire, Chairman and Chief Executive Officer, UnitedHealth Group, Minnetonka, MN John Mendelsohn, President, University of Texas, M.D. Anderson Cancer Center, Houston, TX Kathleen Hardin Mooney, Professor, University of Utah College of Nursing, Salt Lake City, UT Patricia A. Nolan, Director, Rhode Island Department of Health, Providence, RI David Parkinson, Vice-President of Oncology, Amgen, Inc., Thousand Oaks, CA John D. Potter, Senior Vice President and Director, Division of Public Health Sciences, Fred Hutchinson Cancer Research Center and Professor of Epidemiology, University of Washington, Seattle, WA Louise Russell, Research Professor of Economics, Institute for Health, Rutgers University, New Brunswick, NJ Thomas J. Smith, Professor, Division of Hematology, Medical College of Virginia at Virginia Commonwealth University, Richmond, VA Robert C. Young, President, American Cancer Society and Fox Chase Cancer Center, Philadelphia, PA

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia National Cancer Policy Board Staff Roger C. Herdman, Director Jill Eden, Senior Program Officer Hellen Gelband, Senior Program Officer Maria Hewitt, Senior Program Officer Sharyl Nass, Senior Program Officer Judith Wagner, Scholar-in-Residence Penelope Smith, Research Associate Kathryn Barletta, Research Assistant Elizabeth J. Brown, Research Assistant Mary Ann Pryor, Senior Program Assistant Anike L. Johnson, Administrative Assistant

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia 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 NRC’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its 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 draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report: Stephen B. Edge, Roswell Park Cancer Institute Philip Huang, Texas Department of State Health Services Elizabeth A. McGlynn, The RAND Corporation Henry W. Riecken, University of Pennsylvania, Professor Emeritus Barbara K. Rimer, Lineberger Comprehensive Cancer Center and School of Public Health, University of North Carolina at Chapel Hill Nancy Weiss, Texas Cancer Registry Rodger Winn, Clinical Consultant, National Quality Forum Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Harold C. Sox, Annals of

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia Internal Medicine, American College of Physicians of Internal Medicine, and Melvin Worth, Scholar-in-Residence, Institute of Medicine. Appointed by the National Research Council and Institute of Medicine, they were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia Acknowledgments The Committee on Assessing Improvements in Cancer Care in Georgia wishes to acknowledge the many people whose time and contributions made this report possible. Agency for Healthcare Research and Quality Ed Kelley American Cancer Society Michael Thun American Society for Clinical Oncology Jennifer Padberg Brown University Joan Teno Centers for Disease Control and Prevention Lesley Given Amy Harris Nancy Lee Fred Stallings DeKalb Surgical Associates John Kennedy Emory University Health Sciences Center and Rollins School of Public Health Otis Brawley Jim Curran Michael Johns

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia Jonathan Liff Jack Mandel Jonathan W. Simons John L. Young Georgia Cancer Coalition Kate Canterbury Maryalice Moses Nancy Paris Kathy Russell Russell Toal Bill Todd Georgia Division of Public Health Rana Bayakly James Brannon Dafna Kanny Linda Martin Christy McNamara Kim Redding Georgia Health Policy Center Karen Minyard Georgia Medical Care Foundation Bill McClellan Tom W. Williams Georgia Society of Clinical Oncology Tom Andrews Charles Henderson Frederick M. Schnell Harvard School of Public Health Heather Palmer Institute for Clinical Systems Improvement Gordon Mosser Joint Commission on Accreditation of Healthcare Organizations Elvira Ryan Marin General Hospital Lloyd Miyawaki Miami University of Ohio John Bailer Morehouse School of Medicine Daniel Blumenthal Nigel Harris George Rust Louis Sullivan

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia National Cancer Institute Neeraj Arora Molla Donaldson National Committee for Quality Assurance Greg Pawlson Phil Renner National Quality Forum Kenneth Kizer Elaine Power Northwest Crescent Debbie Davis Diane Stapleton Promina Health System Betty Castellani Jeff Etchason Andrew Morley, Jr. Southeast Georgia Alliance W. Kent Guion J. Ted Holloway William Hoskins Southwest Georgia Alliance Angela Prince Rita Salain University of Southern California David Quinn University of Wisconsin June Dahl Woodruff Foundation Charles McTier

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia Contents     EXECUTIVE SUMMARY   1      Approach to the Study: Key Concepts and Methods,   2      Recommended Measures for Assessing the Quality of Cancer Care in Georgia,   4      Quality Measures Related to Preventing Cancer,   4      Quality Measures Related to Detecting Cancer Early,   7      Quality Measures Related to Diagnosing Cancer,   8      Quality Measures Related to Treating Cancer,   10      Crosscutting Issues in Assessing the Quality of Cancer Care,   13      Looking Ahead to the Implementation of Quality-of-Cancer-Care Measures in Georgia,   13 1   INTRODUCTION   19      Context for This Report,   20      IOM’s Work on Quality of Health Care,   21      Principles and Framework for Assessing Quality,   22      Organization of This Report,   23 2   CONCEPTS, METHODS, AND DATA SOURCES   26      Key Concepts,   27      What Is Good Quality Health Care?,   27      What Are Health Care Quality Measures?,   28

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia      Key Methods,   30      Guiding Principles and Criteria Used to Select Quality Measures of Cancer Care,   30      Consideration of Levels of Evidence for Quality-of-Cancer-Care Measures,   32      Focus on Clinical Indicators of the Quality of Cancer Care,   33      Focus on Four Common Cancers in Adults,   34      Expert Panel Process,   34      Sources of Quality-of-Cancer-Care Measures Considered,   36      Data for Recommended Quality-of-Cancer-Care Measures in Georgia,   36      Cancer Registries,   38      Medical Records,   44      Administrative Claims,   45      Patient and Population Surveys,   46      Issues in Interpreting Quality-of-Cancer-Care Data,   48      Summary,   49 3   PREVENTING CANCER   54      Recommended Measures for Tracking the Quality of Cancer Prevention,   56      Smoking Rates and Interventions,   56      Trend in Obesity,   58      Cancer Incidence Rates,   60      Data Sources,   62      Summary,   62      Quality Measure Specifications: Preventing Cancer,   64 4   DETECTING CANCER EARLY   79      Recommended Measures for Tracking the Quality of Early Cancer Detection,   81      Use of Cancer Screening Interventions,   81      Cancer Stage at Diagnosis,   88      Data Sources,   92      Summary,   92      Quality Measure Specifications: Detecting Cancer Early,   94 5   DIAGNOSING CANCER   108      Recommended Measures for Tracking the Quality of Cancer Diagnosis,   110      Adequacy of Cancer Diagnostic and Surgical Specimens,   110      Adequacy of Pathology Reporting on Cancer Surgical Specimens,   116

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia      Documentation of Cancer Pathologic Stage Before Chemotherapy or Radiation Treatment Begins,   123      Data Sources,   125      Summary,   125      Quality Measure Specifications: Diagnosing Cancer,   127 6   TREATING CANCER   160      Recommended Measures for Tracking the Quality of Cancer Treatment,   162      Receipt of Appropriate Primary Therapy for Cancer,   162      Receipt of Appropriate Adjuvant Therapy for Cancer,   168      Receipt of Appropriate Follow-Up After Treatment for Cancer,   172      Minimization of Cancer Patients’ Suffering,   174      Cancer Survival and Mortality Rates,   177      Data Sources,   181      Summary,   181      Quality Measure Specifications: Treating Cancer,   183 7   CROSSCUTTING ISSUES IN ASSESSING THE QUALITY OF CANCER CARE   223      Capturing Cancer Patients’ Experiences,   223      Designing Surveys of Cancer Patients,   224      Potential Topics for Cancer Patient Surveys,   228      Evaluating Disparities in Cancer Care,   230      What Causes Disparities in Health and Health Care?,   230      Data Infrastructure Needed to Reduce Cancer Disparities,   230      Summary,   236 8   LOOKING AHEAD TO THE IMPLEMENTATION OF QUALITY-OF-CANCER-CARE MEASURES   241     1  The use of quality-of-cancer-care measures has a dual purpose: evaluating progress and motivating change,   242     2  GCC should develop a cancer surveillance, monitoring, and evaluation plan that incorporates a strategy for promotion and dissemination,   242     3  Georgia’s quality-of-cancer-care monitoring system should be transparent and very public,   243     4  Monitoring of the quality-of-cancer-care indicators should be managed by the highest level of GCC,   244     5  GCC’s quality-of-cancer-care infrastructure should build on Georgia’s existing measurement and reporting systems,   244     6  Credibility of the system will be paramount: collect, interpret, and present the results carefully,   245      Summary,   245

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia     APPENDIXES     A   Sources of Cancer-Related Clinical Guidelines and Quality Indicators   247 B   Sources of Data: Surveys and Datasets   257 C   Glossary, Abbreviations, and Acronyms   264

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia List of Boxes, Figures, and Tables Executive Summary Table ES-1   Recommended Quality Measures for Tracking Georgia’s Progress in Cancer Control,   5 Chapter 2 Boxes 2-1   Strategic Goals of the Georgia Cancer Coalition,   31 2-2   Levels of Evidence Applied to Clinical Research,   33 2-3   Principal Sources of Candidate Quality-of-Cancer-Care Measures Considered by the IOM Committee,   37 Figures 2-1   Domains of the cancer control continuum with selected examples of activities in each domain,   28 2-2   Sample scoring sheet used to evaluate potential quality measures,   29 2-3   Sample calculation of a quality-of-cancer-care measure (breast cancer screening),   49 Tables 2-1   Incidence and Mortality in Georgia from the Four Most Common Cancers, 2000,   34 2-2   Potential Sources of Data for Quality-of-Cancer-Care Measures and Benchmarks,   39

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia 2-3   Strengths and Weaknesses of Key Sources of Data for Quality-of-Cancer-Care Measures and Benchmarks,   40 Chapter 3 Box 3-1   Recommended Measures for Tracking the Quality of Cancer Prevention,   55 Figure 3-1   Obesity by body mass index, Georgia, 1990-2002,   60 Tables 3-1   Cigarette Smoking by Adults and Adolescents in Georgia,   58 3-2   Incidence of the Four Leading Cancers in Georgia, by Sex, 2000,   61 3-3   Potential Data Sources for Recommended Measures of the Quality of Cancer Prevention in Georgia,   63 Chapter 4 Boxes 4-1   Recommended Measures for Tracking the Quality of Early Cancer Detection,   80 4-2   Colorectal Cancer Screening Procedures and Recommended Frequency,   86 4-3   The SEER Summary Staging System for Cancer,   89 Figures 4-1   Breast cancer incidence and mortality in Georgia, by age group, 1997-2001,   83 4-2   Incidence of colorectal cancer by age at diagnosis and sex, United States, 1997-2001,   85 4-3   Percentage of adults aged 50 and older in Georgia who ever had a colonoscopy or sigmoidoscopy, by sex, 1993-2002,   87 Tables 4-1   Breast Cancer Screening Rate Among Women over Age 40 in Georgia, by Income and Access to Medical Care, 2002,   84 4-2   Colorectal Cancer Screening Rate Among Adults over Age 50 in Georgia, by Age and Access to Medical Care, 2001,   87 4-3   Survival of Breast Cancer and Colorectal Cancer in the United States, by Stage at Diagnosis, 1995-2000,   88 4-4   Early- and Advanced-Stage Breast and Colorectal Cancers at Diagnosis in Georgia as a Percentage of Total Cases, 1999-2000,   90 4-5   Incidence of Advanced-Stage Breast and Colorectal Cancers, by Age, in the United States, 2000,   91

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia 4-6   Potential Data Sources for Recommended Measures of the Quality of Cancer Early Detection in Georgia,   93 Chapter 5 Boxes 5-1   Recommended Measures for Tracking the Quality of Cancer Diagnosis,   109 5-2   The Breast Imaging and Reporting Data System (BI-RADS),   112 5-3   NM Stages of Breast Cancer,   115 Figure 5-1   Pathology report checklist for a prostate cancer surgical specimen, College of American Pathologists,   118 Tables 5-1   Cancer Programs in Georgia That Are Certified by the Commission on Cancer,   122 5-2   Potential Data Sources for Recommended Measures of the Quality of Cancer Diagnosis in Georgia,   126 Chapter 6 Boxes 6-1   Recommended Measures for Tracking the Quality of Cancer Treatment,   161 6-2   Determining the Risk of Recurrence in Prostate Cancer Patients,   165 6-3   Caveat Emptor: Interpreting Cancer Survival Statistics,   179 Figures 6-1   Mortality rate for each of four leading cancers in Georgia, 1994-2002,   180 6-2   Mortality rate for all cancers in Georgia, 1994-2002,   180 Tables 6-1   Relative Survival Rates for Breast, Colorectal, Lung and Bronchus, and Prostate Cancers,   178 6-2   Potential Data Sources for Recommended Measures of the Quality of Cancer Treatment in Georgia,   182 Chapter 7 Boxes 7-1   Rapidly Changing Demographics in Georgia,   232 7-2   Standardizing Racial and Ethnic Categories for Public Policy Uses,   234

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia Tables 7-1   Examples of Survey Instruments That Measure the Patient Experience and Quality of Life,   225 7-2   Potential Domains and Topics for Cancer Patient Surveys,   229 7-3   Incidence and Mortality Rates for Four Leading Cancers in Georgia, by Gender, Race, and Ethnicity, 2001,   231 7-4   Percentage of Nonelderly Persons in Georgia Who Are Uninsured, by Race and Ethnicity, 2002-2003,   233 7-5   Percentage of Persons in Georgia Who Are Living in Poverty, by Race and Ethnicity, 2002-2003,   233 Chapter 8 Figure 8-1   Schematic of the Georgia Cancer Coalition’s Quality Monitoring, Surveillance, and Evaluation Unit,   243