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Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage. Washington, DC: The National Academies Press. doi: 10.17226/13408.
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MONITORING HIV CARE
IN THE UNITED STATES

A Strategy for Generating National
   Estimates of HIV Care and Coverage

Committee to Review Data Systems for Monitoring HIV Care

Board on Population Health and Public Health Practice


Morgan A. Ford and Carol Mason Spicer, Editors

INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.

www.nap.edu

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage. Washington, DC: The National Academies Press. doi: 10.17226/13408.
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THE NATIONAL ACADEMIES PRESS    500 Fifth Street, NW    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. HHSP23320042509XI between the National Academy of Sciences and the White House Office of National AIDS Policy. 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.

International Standard Book Number-13: 978-0-309-25715-2
International Standard Book Number-10: 0-309-25715-8

Additional copies of this report are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu.

For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu.

Copyright 2012 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.

Suggested citation: IOM (Institute of Medicine). 2012. Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage. Washington, DC: The National Academies Press.

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage. Washington, DC: The National Academies Press. doi: 10.17226/13408.
×

Knowing is not enough; we must apply.
Willing is not enough; we must do.
”      

                                                —Goethe

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INSTITUTE OF MEDICINE
                OF THE NATIONAL ACADEMIES

Advising the Nation. Improving Health.

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage. Washington, DC: The National Academies Press. doi: 10.17226/13408.
×

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. Ralph J. Cicerone 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. Charles M. Vest 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. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council.

www.national-academies.org

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage. Washington, DC: The National Academies Press. doi: 10.17226/13408.
×

COMMITTEE TO REVIEW DATA SYSTEMS FOR MONITORING HIV CARE

PAUL A. VOLBERDING (Chair), Professor, Department of Medicine, University of California, San Francisco

ANGELA A. AIDALA, Associate Research Scientist, Department of Sociomedical Sciences, Joseph L. Mailman School of Public Health, Columbia University, New York, New York

DAVID D. CELENTANO, Professor and Chair, Department of Epidemiology, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland

MOUPALI DAS, Director of Research, HIV Prevention Section, San Francisco Department of Public Health, California

VICTOR G. DeGRUTTOLA, Professor and Chair, Department of Biostatistics, Harvard School of Public Health, Boston, Massachusetts

CARLOS DEL RIO, Professor and Chair, Hubert Department of Global Health, Rollins School of Public Health, Emory University, Atlanta, Georgia

MARSHALL FORSTEIN, Associate Professor of Psychiatry, Department of Psychiatry, Harvard Medical School, Boston, Massachusetts

CARMINE GRASSO, Director (Retired), Care and Treatment Unit, New Jersey Department of Health and Senior Services, Trenton

SHANNON HOUSER, Associate Professor, Department of Health Services Administration, University of Alabama, Birmingham

JENNIFER KATES, Vice President and Director, Global Health & HIV Policy, The Henry J. Kaiser Family Foundation, Washington, DC

ERIKA G. MARTIN, Assistant Professor, Rockefeller College of Public Affairs and Policy, State University of New York at Albany

KENNETH H. MAYER, Visiting Professor, Harvard Medical School; Medical Research Director, Fenway Health, Boston, Massachusetts

VICKIE M. MAYS, Professor, Departments of Psychology and Health Services, School of Public Health, University of California, Los Angeles

DAVID P. PRYOR, West Coast Medical Director, NBC Universal, Universal City, California

STEN H. VERMUND, Professor of Pediatrics, Amos Christie Chair in Global Health, and Director, Institute for Global Health, Vanderbilt University, Nashville, Tennessee

ADAM B. WILCOX, Associate Professor, Department of Biomedical Informatics, Columbia University, New York, New York

DOUGLAS WIRTH, President and Chief Executive Officer, AmidaCare, New York, New York

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage. Washington, DC: The National Academies Press. doi: 10.17226/13408.
×

Project Staff

MORGAN A. FORD, Study Director

CAROL MASON SPICER, Associate Program Officer

COLIN F. FINK, Senior Program Assistant

ALEJANDRA MARTÍN, Research Assistant (April-July 2012)

FLORENCE POILLON, Copy Editor

HOPE HARE, Administrative Assistant

ROSE MARIE MARTINEZ, Director, Board on Population Health and Public Health Practice

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage. Washington, DC: The National Academies Press. doi: 10.17226/13408.
×

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 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:

Nanette Benbow, Chicago Department of Public Health

Diane Binson, University of California, San Francisco

Samuel A. Bozzette, The RAND Corporation

Francine Cournos, Columbia University

Anne Donnelly, Project Inform

Abraham D. Flaxman, University of Washington

Stephen J. Gange, Johns Hopkins University

Maxine Hayes, Washington State Department of Health

Amy Justice, Yale University

Michael Lindsay, Emory University School of Medicine

Sharon K. Long, Urban Institute

Tomas J. Philipson, The University of Chicago

Elise D. Riley, University of California, San Francisco

Caroline Sabin, University College London

Page viii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage. Washington, DC: The National Academies Press. doi: 10.17226/13408.
×

Fritz Scheuren, University of Chicago

Michael T. Wong, Harvard Medical School

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 Kristine M. Gebbie, Flinders University, and Stephen E. Fienberg, Carnegie Mellon University. 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.

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage. Washington, DC: The National Academies Press. doi: 10.17226/13408.
×

Acknowledgments

The Committee to Review Data Systems for Monitoring HIV Care (the committee) and the Institute of Medicine (IOM) staff would like to thank many individuals for providing information, data, discussions, presentations, and comments throughout this study. The insight, expertise, and information provided by these individuals were essential to the development of the conclusions and recommendations of this report.

This report would not have been possible without the generous contributions from government officials and survey methods researchers. From the Centers of Disease Control and Prevention, the committee would like to thank James Heffelfinger, Amy Lansky, and Jacek Skarbinski for their responses to inquiries and provision of the most current version of the Medical Monitoring Project data collection instruments and protocol. The committee would also like to thank Sindre Rolstad (AstraZeneca R&D) and Angela Knudson and José Zuniga of the International Association of Physicians in AIDS Care for submitting articles requested by the IOM staff and committee. Their contributions provided vital information to help provide a more complete picture of the methods used to develop the estimates of the populations affected most by HIV in the United States.

Finally, the committee would like to acknowledge the IOM staff for their support and expertise, in particular, the efforts of Morgan Ford (study director), Carol Mason Spicer (associate program officer), and Alejandra Martín (research assistant). The committee also appreciates the efforts of Colin F. Fink (senior program assistant) for attending to the logistical requirements for the meetings and for aiding in the drafting of the report. The committee also recognizes Rose Marie Martinez (director, Board on

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage. Washington, DC: The National Academies Press. doi: 10.17226/13408.
×

Population Health and Public Health Practice). Additional staff support included assistance from Laura DeStefano (Office of Reports and Communication), Hope Hare (administrative assistant), Florence Poillon (copyeditor), and Doris Romero (financial associate). The IOM would also like to take this opportunity to thank the support staff for our committee members who were incredibly helpful with the logistical and administrative aspects of this project: Alexandra Blue (Amida Care, Inc.); Donna Hess (Emory University); Carolyn Ingalls (Harvard University); Sue Johnson and Andrea Karis (Fenway Institute); Nancy Leonard (Johns Hopkins University); Taylor Maturo (University of California, San Francisco); Jennifer St. Clair (Vanderbilt); and Alma Yates (University of California, San Francisco).

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage. Washington, DC: The National Academies Press. doi: 10.17226/13408.
×
Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage. Washington, DC: The National Academies Press. doi: 10.17226/13408.
×
Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage. Washington, DC: The National Academies Press. doi: 10.17226/13408.
×

Abbreviations and Acronyms

ACA

Patient Protection and Affordable Care Act

ACSUS

AIDS Cost and Services Utilization Survey

ADAP

AIDS Drug Assistance Program

AHRQ

Agency for Healthcare Research and Quality

AIDS

acquired immune deficiency syndrome

ART

antiretroviral therapy

BRFSS

Behavioral Risk Factor Surveillance System

CCW

Chronic Condition Data Warehouse

CDC

Centers for Disease Control and Prevention

CMS

Centers for Medicare & Medicaid Services

CNICS

CFAR [Center for AIDS Research] Network of Integrated Clinical Systems

FPL

federal poverty level

GDP

gross domestic product

HARS; eHARS

HIV/AIDS Reporting System; Enhanced HIV/AIDS Reporting System

HCSUS

HIV Cost and Services Utilization Study

HHS

Department of Health and Human Services

HIV

human immunodeficiency virus

HIV RNA

viral load

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage. Washington, DC: The National Academies Press. doi: 10.17226/13408.
×

HIVRN

HIV Research Network

HMO

health maintenance organization

HRSA

Health Resources and Services Administration

IOM

Institute of Medicine

IRB

institutional review board

IT

information technology

MAX

Medicaid Analytic eXtract

MEPS

Medical Expenditure Panel Survey

MHF

Medical History Form

MMP

Medical Monitoring Project

MRA

medical record abstraction

MSIS

Medicaid Statistical Information System

MSM

men who have sex with men

NA-ACCORD

North American AIDS Cohort Collaboration on Research and Design

NCHS

National Center for Health Statistics

NHANES

National Health and Nutrition Examination Survey

NHAS

National HIV/AIDS Strategy

NHID

Normative Health Information Database® (Ingenix)

NHIS

National Health Interview Survey

NHSS

National HIV Surveillance System

NIH

National Institutes of Health

NSDUH

National Survey on Drug Use and Health

OMB

Office of Management and Budget

ONAP

Office of National AIDS Policy (White House)

PCIP

Preexisting Condition Insurance Plan

PDP

population definition period

ResDAC

Research Data Assistance Center

RSR

Ryan White HIV/AIDS Program Services Report

RTS

real-time sampling

SP

surveillance period

SPIF

Surveillance Period Inpatient Form

SPSF

Surveillance Period Summary Form

SPVF

Surveillance Period Visit Form

SSDI

Social Security Disability Insurance

Page xvii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage. Washington, DC: The National Academies Press. doi: 10.17226/13408.
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TrOOP

true out-of-pocket

USPSTF

U.S. Preventive Services Task Force

VHA

Veterans Health Administration

VL

viral load

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In September 2010, the White House Office of National AIDS Policy commissioned an Institute of Medicine (IOM) committee to respond to a two-part statement of task concerning how to monitor care for people with HIV. The IOM convened a committee of 17 members with expertise in HIV clinical care and supportive services, epidemiology, biostatistics, health policy, and other areas to respond to this task. The committee's first report, Monitoring HIV Care in the United States: Indicators and Data Systems, was released in March 2012. The report identified 14 core indicators of clinical HIV care and mental health, substance abuse, and supportive services for use by the Department of Health and Human Services (HHS) to monitor the impact of the National HIV/AIDS Strategy (NHAS) and the Patient Protection and Affordable Care Act (ACA) on improvements in HIV care and identified sources of data to estimate the indicators.

The report also addressed a series of questions related to the collection, analysis, and dissemination of data necessary to estimate the indicators.

In this second report, Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage, the committee addresses how to obtain national estimates that characterize the health care of people with HIV within the context of the ACA, both before 2014 and after 2014, when key provisions of the ACA will be implemented. This report focuses on how to monitor the anticipated changes in health care coverage, service utilization, and quality of care for people with HIV within the context of the ACA.

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