MEASURING WHAT MATTERS
Allocation, Planning, and Quality Assessment for the Ryan White CARE Act
THE NATIONAL ACADEMIES PRESS
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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.
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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
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
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
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
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
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.
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:
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,
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.
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.