MEASURING WHAT MATTERS

Allocation, Planning, and Quality Assessment for the Ryan White CARE Act

Committee on the Ryan White CARE Act: Data for Resource Allocation, Planning, and Evaluation

Board on Health Promotion and Disease Prevention

INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS
Washington, D.C. www.nap.edu



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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act MEASURING WHAT MATTERS Allocation, Planning, and Quality Assessment for the Ryan White CARE Act Committee on the Ryan White CARE Act: Data for Resource Allocation, Planning, and Evaluation Board on Health Promotion and Disease Prevention INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act 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 Contract No. 200-2000-00629 Task Order #9 between the National Academy of Sciences and the Health Resources and Services Administration (HRSA) and the Centers for Disease Control and Prevention (CDC). 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 Measuring what matters : allocation, planning, and quality assessment for the Ryan White Care Act / Committee on the Ryan White CARE Act: Data for Resource Allocation, Planning and Evaluation, Board on Health Promotion and Disease Prevention. p. ; cm. Includes bibliographical references. ISBN 0-309-09115-2 (pbk.) 1. United States. Ryan White Comprehensive AIDS Resources Emergency Act of 1990. 2. AIDS (Disease)—Patients—Services for—United States—Finance. [DNLM: 1. United States. Ryan White Comprehensive AIDS Resources Emergency Act of 1990. 2. Acquired Immunodeficiency Syndrome—United States. 3. HIV Infections—United States. 4. Financing, Government—United States. 5. Public Health—United States. 6. Quality of Health Care—standards—United States. WC 503 M484 2004] I. Institute of Medicine (U.S.). Committee on the Ryan White CARE Act: Data for Resource Allocation, Planning and Evaluation. RA643.83.M43 2004 2004005892—dc22 2004005892 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 2004 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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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act “Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES Adviser to the Nation to Improve Health

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act 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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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act COMMITTEE ON THE RYAN WHITE CARE ACT: DATA FOR RESOURCE ALLOCATION, PLANNING, AND EVALUATION PAUL D. CLEARY, Ph.D. (Chair), Professor, Department of Health Care Policy, Harvard Medical School RONALD BAYER, Ph.D., Professor, Joseph L. Mailman School of Public Health, Columbia University ERIC G. BING, M.D., Ph.D., M.P.H., Director, Drew Center for AIDS Research, Education and Services, Charles R. Drew University of Medicine and Science SAMUEL A. BOZZETTE, M.D., Ph.D., Director, Health Services Research Section, Veteran Affairs Health Care System, San Diego; Professor of Medicine, University of California San Diego; Senior Natural Scientist, The RAND Corporation DAVID D. CELENTANO, Sc.D., Professor and Director, Infectious Diseases Program, Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health VICTOR G. DE GRUTTOLA, S.M., Sc.D., Professor, Department of Biostatistics, Harvard School of Public Health CARLOS DEL RIO, M.D., Professor of Medicine and Chief of Medical Service, Grady Memorial Hospital, Emory University School of Medicine AIDA GIACHELLO, Ph.D., Associate Professor, Jane Addams College of Social Work, University of Illinois at Chicago WILLIAM HOLZEMER, R.N., Ph.D., F.A.A.N., Professor and Associate Dean, International Programs, Department of Community Health Systems, University of California San Francisco School of Nursing SANDRAL HULLETT, M.D., M.P.H., Acting CEO, Jefferson Health System WENDY K. MARINER, J.D., L.L.M., M.P.H., Professor, Health Law, Boston University Schools of Public Health, Law and Medicine BETH MEYERSON, M.Div., Ph.D., President, Policy Resource Group, LLC A. DAVID PALTIEL, Ph.D., Associate Professor, Division of Health Policy and Administration, School of Public Health, Yale University HAROLD POLLACK, Ph.D., Associate Professor, Social Service Administration, University of Chicago GEORGE W. RUTHERFORD, III, M.D., Salvatore Lucia Professor of Preventive Medicine and Epidemiology, Department of Epidemiology and Biostatistics, University of California San Francisco School of Medicine EILEEN SALINSKY, M.B.A., Senior Research Associate, National Health Policy Forum DAVID R. SMITH, M.D., Chancellor, Texas Tech University System and President, Texas Tech University Health Sciences Center

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act Liaison from the Board on Health Promotion and Disease Prevention ROBERT B. WALLACE, M.D., Irene Ensminger Stecher Professor of Epidemiology and Internal Medicine, Department of Epidemiology, College of Public Health, University of Iowa, College of Medicine Study Staff ALICIA R. GABLE, M.P.H., Study Director REBECCA KLIMAN HUDSON, M.P.H., Research Associate ANNIE O’CONNELL, Senior Project Assistant DONNA ALMARIO, M.P.H., Research Associate AMY GROSSMAN, Senior Project Assistant ROSE MARIE MARTINEZ, Sc.D., Director, Board on Health Promotion and Disease Prevention Consultants AMY FINE, Health Policy Program Consultant, Washington, DC JOHN G.H. PALEN, Ph.D., M.P.H., Associate Research Professor, Department of Health Policy, George Washington University, School of Public Health MICHAEL STOTO, Ph.D., Senior Statistical Scientist, The RAND Corporation, Washington, DC

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act 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 (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: Mariella Cummings, Results Incorporated Haile Debas, University of California San Francisco School of Medicine David Fleming, Bill and Melinda Gates Foundation Lawrence Gostin, Georgetown University Jennifer Kates, Kaiser Family Foundation Stephen Lagakos, Harvard School of Public Health Thomas Louis, Johns Hopkins Bloomberg School of Public Health Bruce Schackman, Weill Medical College of Cornell University Renslow Sherer, University of Chicago Hospitals Martin Wasserman, GlaxoSmithKline Gregory Zaric, University of Western Ontario

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act 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 Maureen Henderson, University of Washington, and Henry Riecken, University of Pennsylvania. Appointed by the NRC 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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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act Acknowledgments This report represents the collaborative efforts of many organizations and individuals, without whom this study would not have been possible. The Committee extends its most sincere gratitude to all those mentioned below. The Committee thanks the sponsors of this study, the Health Resources and Services Administration (HRSA) and the Centers for Disease Control and Prevention (CDC). We extend special gratitude to our project officers, Steven Young of HRSA, and Patricia Sweeney and Monina Klevens, from CDC. They were extremely helpful and patient in handling the Committee’s numerous requests for information. Several other people at HRSA and CDC helped the Committee in various ways, such as participating in site visits and conference calls and responding to data requests. The Committee would particularly like to thank the following people from HRSA: Jill Ashman, Douglas Morgan, Deborah Parham, Kathy Marconi, Magda Barini, Hilda Douglas, Richard Conviser, Faye Malitz, Idalia Sanchez, and John Milberg. People who were central to CDC’s efforts to assist the Committee include Matthew McKenna, Patricia Fleming, Rob Janssen, Bob Frey, Lisa Lee, Hazel Dean, John Karon, Kate Glynn, and Irene Hall. We thank the other HRSA and CDC staff who helped with data requests and provided other support. The Committee conducted several information-gathering activities throughout the course of the study. We thank the following individuals for their helpful and insightful testimony during public sessions of the Committee’s first three meetings:

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act A. Cornelius Baker, Whitman-Walker Clinic, Washington, DC Guthrie Birkhead, New York State Department of Health AIDS Institute G. Stephen Bowen, Broward General Medical Center, Fort Lauderdale, FL Michael Bursaw, County of San Diego Health and Human Services Agency A. Gene Copello, CAEAR Coalition and Florida AIDS Action, Tampa, FL Sharen Duke, AIDS Service Center of Lower Manhattan, New York, NY Geno Dunnington, Whitman-Walker Clinic, Washington, DC Charles Henry, County of Los Angeles Department of Health Services Robert Janssen, Centers for Disease Control and Prevention Jack Jourden, Washington State Department of Health James G. Kahn, Institute for Health Policy Studies, University of California San Francisco Janice Kopelman, Pennsylvania Department of Public Health Matthew McClain, McClain and Associates, Inc., Silver Spring, MD Matthew McKenna, Centers for Disease Control and Prevention Michael Montgomery, California Department of Health Services Judy Owen, North Carolina Department of Health and Human Services John Palen, George Washington University Liza Solomon, Maryland Department of Health and Mental Hygiene Laura Thomas, San Francisco Department of Public Health Craig Thompson, Mississippi State Department of Health Fikirte Wagaw, Chicago Department of Public Health Steven Young, Health Resources and Services Administration The Committee thanks attendees of the discussion session at the HRSA All-Titles Meeting on August 15, 2002. Representatives from the following Title I Eligible Metropolitan Areas (EMAs) attended: Atlanta, GA; Detroit, MI; Dutchess County, NY; Maricopa County, AZ; Miami-Dade, FL; Minneapolis, MN; Philadelphia, PA; Riverside/San Bernardino, CA; and San Juan, PR. A similar discussion session was held with Title II representatives during the annual meeting of the National Alliance of State and Territorial AIDS Directors on May 20, 2002. We would like to thank the AIDS Directors from Puerto Rico, Colorado, Nebraska, Georgia, Kentucky,

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act South Carolina, Maryland, Kansas, California, and New Hampshire who participated in this discussion. The Committee would like to thank the numerous (almost 70) HIV/ AIDS surveillance coordinators and health department staff from over 40 CARE Act grantee areas who participated in a conference call with the committee on July 24, 2003, and shared their “hands-on” experiences of conducting surveillance at the state and local levels. Others from National Alliance of State and Territorial AIDS Directors (NASTAD) and CDC also participated in this call. The Committee commissioned two papers during the course of the study. The first paper by Mike Stoto provided a very helpful assessment of the history of public health surveillance. The second paper, by John Palen, provided a very useful overview of the legislative history of the Ryan White CARE Act and provided significant detail and information for Chapter 2. The Committee wishes to thank the liaison panel members: Terje Anderson, A. Cornelius Baker, Christopher Bates, Ignatius Bau, Guthrie Birkhead, G. Stephen Bowen, Mary Ann Chiasson, Richard Conviser, Gene Copello, Sharen Duke, Helen Fox Fields, Debra Fraser-Howze, Robert Fullilove, Kenneth T. Jones, Jennifer Kates, Seth Kilbourn, Monina Klevens, Christopher Labonte, Miguelina Ileana León, Marsha Martin, Jean McGuire, Jesse Milan, Thomas L. Milne, Murray Penner, Kees Reitmeijer, Matt Salo, Jane Silver, Paul Simon, Wayne Smith, Tim Westmoreland, Joy Johnson Wilson, David Wunsch, and Steven Young. The Committee is grateful for their guidance. The following people also provided the Committee with guidance and further understanding of complex study issues: Jennifer Kates, Tim Westmoreland, Thomas Louis, Tom Jabine, Connie Citro, Sandy Berry, and John Fanning. We also would like to thank Steven Asch and Doug Owens who provided a technical review of select chapters of the report. Throughout the course of the study, several people from NASTAD were exceptionally helpful in providing information to the Committee. In particular, the Committee would like to thank Julie Scofield, Arnie Doyle, Murray Penner, Chris Aldridge, and Connie Jorstad. The Committee thanks NASTAD for collecting information on states’ HIV surveillance funding and the the 41 state AIDS directors and staff who responded to NASTAD’s request for information. Donna Glebatis (New York State Department of Health), Polly Thomas (New York City Department of Health and Mental Hygiene), Sandra Schwarz (San Francisco Department of Public Health), and their staff members provided helpful information on HIV surveillance in their areas.

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act The Committee thanks representatives from the Alabama Department of Public Health and several Ryan White Title III clinics who, during site visits, provided valuable insight about the experience of HIV/AIDS surveillance and providing care in Alabama: Health Services Center (Anniston); Franklin Primary Care Center (Mobile); Montgomery AIDS Outreach; Copeland Care Clinic (Selma, Tuskegee); Maude Whatley Health Services (Eutaw, Livingston); Alabama State Health Department; Jefferson County Health Department; St. George’s Clinic (Jefferson County). The Committee would like to thank the numerous staff members of the Institute of Medicine (IOM), the National Research Council, and the National Academies Press who contributed to the development, review, production, and dissemination of this report. The committee is most grateful to Alicia Gable, who did an outstanding job of directing this very complex study. She was assisted by Rebecca Kliman Hudson, Annie O’Connell, Donna Almario, and Amy Grossman, all of whom provided exceptional research and administrative support. Natane Singleton also provided excellent project support as an intern. Amy Fine served as a consultant to the project and assisted the Committee and IOM staff with facilitation of discussions and report writing. We also thank Sandra Hackman for editing the report. Rose Marie Martinez and Susanne Stoiber provided valuable guidance and oversight for this study.

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act Contents     EXECUTIVE SUMMARY   1      Charge to the Committee,   3      Use of HIV Data in the Title I and II Allocation Formulas,   3      Estimating Resource Needs,   14      Measuring Quality of Care,   17      Summary,   22      References,   23 1   INTRODUCTION   27      Impetus for this Study,   28      Study Charge,   30      Study Methods,   34      Guiding Principles,   34      Organization of the Report,   38      References,   38 2   OVERVIEW OF THE HIV/AIDS EPIDEMIC AND THE RYAN WHITE CARE ACT   41      Overview of the HIV/AIDS Epidemic,   41      Paying for HIV/AIDS Care,   44      History of the CARE Act,   45      Current Structure of the Act,   52      Overview of CARE Act Allocation Formulas,   61      References,   69

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act 3   PUBLIC HEALTH AND HIV/AIDS SURVEILLANCE   73      Public Health Surveillance,   73      AIDS and HIV Case Reporting,   76      Other Methods for Estimating HIV Prevalence,   80      References,   84 4   HIV REPORTING DATA AND TITLE I AND II FORMULAS   87      Capability of State HIV Reporting Systems to Provide Data for the Formulas,   90      Comparability of Data Quality Across Jurisdictions,   94      Relative Disease Burden and Ranking of Need Across Jurisdictions,   118      Sensitivity of the Formula Allocations to Changes in the Underlying Input Data,   121      Methods for Improving Data for the Formulas,   125      Recommendations,   128      References,   130 5   ESTIMATING RESOURCE NEEDS   135      Factors Affecting Resource Needs,   137      Title I Supplemental Award Process,   140      Criteria for Assessing Measures of Resource Needs,   144      Analysis of Title I Supplemental Applications,   146      Findings,   168      Available Data Sources,   171      Proposed Approach,   172      Recommendations,   184      References,   186 6   MEASURING QUALITY OF CARE   188      Current HRSA/HAB Quality of Care Activities,   190      Four-Dimensional Conceptual Framework for HIV Quality Assessment,   194      Principles for Selecting Quality-of-Care Measures,   200      Existing Quality-of-Care Measures for HIV/AIDS,   202      Findings,   213      Recommendations,   215      References,   217 7   FINDINGS AND RECOMMENDATIONS   221      References,   233

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act     APPENDIXES         A  Acronyms   237     B  Financial Resources of States for HIV/AIDS Reporting   239     C  Analyses of the Sensitivity of the Formula Allocations to Underlying Changes in Input Data   247     D  Methodological Details of HCSUS Analyses   261     E  Tables of HIV/AIDS Quality Measures from Selected Sources   267     F  Biographies   295

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