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MONITORING HIV CARE
IN THE UNITED STATES
INDICATORS AND DATA SYSTEMS
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
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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 Govern-
ing Board of the National Research Council, whose members are drawn from the
councils of the National Academy of Sciences, the National Academy of Engineer-
ing, and the Institute of Medicine. The members of the committee responsible for
the report were chosen for their special competences and with regard for appropri-
ate 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: 978-0-309-21850-4
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Greece, now held by the Staatliche Museen in Berlin.
Suggested citation: IOM (Institute of Medicine). 2012. Monitoring HIV Care in
the United States: Indicators and Data Systems. Washington, DC: The National
Academies Press.
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“Knowing is not enough; we must apply.
Willing is not enough; we must do.”
— Goethe
Advising the Nation. Improving Health.
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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 Acad-
emy 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
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The National Academy of Engineering was established in 1964, under the charter
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and recognizes the superior achievements of engineers. Dr. Charles M. Vest is presi-
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Sciences to secure the services of eminent members of appropriate professions in
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The National Research Council was organized by the National Academy of Sci-
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the National Research Council.
www.national-academies.org
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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
v
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Project Staff
MORGAN A. FORD, Study Director
CAROL MASON SPICER, Associate Program Officer
COLIN F. FINK, Senior Program Assistant (since July 2011)
CHINA DICKERSON, Senior Program Assistant (September 2010–July
2011)
ROSE MARIE MARTINEZ, Director, Board on Population Health and
Public Health Practice
HOPE HARE, Administrative Assistant
vi
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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:
Ayse Akincigil, Rutgers University
John Auerbach, Massachusetts Department of Public Health
Nanette D. Benbow, Chicago Department of Public Health
Sheila M. Bird, University Forvie Site
Francine Cournos, Columbia University
Karen B. DeSalvo, City of New Orleans, Health Department
Ronald Hershow, University of Illinois at Chicago
Nicholas P. Jewell, University of California, Berkeley
James G. Kahn, University of California, San Francisco
James S. Kahn, University of California, San Francisco
Michael Lindsay, Emory University School of Medicine
J. Marc Overhage, Siemens Medical Solutions USA, Inc.
Tomas J. Philipson, University of Chicago
Elise D. Riley, University of California, San Francisco
vii
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viii REVIEWERS
Fritz J. Scheuren, University of Chicago
Judith Solomon, Center on Budget and Policy Priorities
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.
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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, presenta-
tions, 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.
To create this report, we needed the cooperation of the HIV care data
monitoring systems from across the United States. The committee thanks
the following people for responding to requests for information: Roxanne
Andrews and Irene Fraser (Agency for Healthcare Research and Quality)
for the Healthcare Cost and Utilization Project; Chris Bina (Federal Bureau
of Prisons) for the Bureau Electronic Medical Record; Linda Cummings
(National Public Health and Hospital Institute); Peter Delany (Substance
Abuse and Mental Health Services Administration) for the National Survey
on Drug Use and Health and the Minority Substance Abuse/HIV Preven-
tion Initiative; Janet Durfee and Victoria Davey (Department of Veterans
Affairs) for the Clinical Case Registry: HIV; Kelly Gebo (Johns Hopkins
University) for the HIV Research Network (HIVRN); Esther Hing (Centers
for Disease Control and Prevention [CDC]) for the National Ambulatory
Medical Care Survey and the National Hospital Ambulatory Medical Care
Survey; Michael Horberg (Kaiser Permanente [KP]) for KP electronic medi-
cal records and databases; Jeffrey Jacques (ActiveHealth); Suzanne Kinsky
(AIDS United) for AIDS United Access to Care; Mari Kitahata (University
of Washington) for Centers for AIDS Research Network of Integrated
Clinical Systems and the North American AIDS Cohort Collaboration on
ix
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x ACKNOWLEDGMENTS
Research and Design (NA-ACCORD); Amy Lansky (CDC) for the Na-
tional HIV Surveillance System, the Medical Monitoring Project, the HIV
Outpatient Study, and the SUN Study; Faye Malitz (Health Resources and
Services Administration [HRSA]) for the Ryan White HIV/AIDS Program
and AIDS Drug Assistance Program; Kay Miller (Thomson Reuters) for the
Thomson Reuters MarketScan Research Databases; Richard Moore (Johns
Hopkins University) for NA-ACCORD and HIVRN; Elaine Olin (Centers
for Medicare and Medicaid Services [CMS]) for the Medicaid Statistical In-
formation System; Brigg Reilley and Lisa Neel (Indian Health Service [IHS])
and Scott Giberson (U.S. Public Health Service) for the IHS Resource and
Patient Management System, HIV/AIDS Management System, and Clinical
Reporting System; Thomas Reilly (CMS) for the Medicare Chronic Con-
dition Warehouse; Peter Shin and Sara Rosenbaum (George Washington
University Medical Center) and Rene Sterling (HRSA) for the Uniform Data
System; David Vos (Department of Housing and Urban Development) for
Housing Opportunities for Persons with HIV/AIDS; Nancy Walczak (The
Lewin Group) for the Ingenix Normative Health Information Database®;
Marcus Wilson (HealthCore) for HealthCore Integrated Research Database
(HIRD®).
The committee thanks the presenters for volunteering to share their
expertise, knowledge, data, and opinions not only with the committee but
also with the members of the public who participated in its four open ses-
sions. The committee recognizes the following individuals from its open
session meeting on February 6, 2011 (listed in order of their presentations):
Jeffrey Crowley (White House Office of National AIDS Policy [ONAP]);
Greg Millett (CDC); Michael Horberg (KP). The committee recognizes
the following individuals from its open session meeting on April 28, 2011
(listed in order of their presentations): Ron Valdiserri (U.S. Department
of Health and Human Services [HHS]); Amy Lansky (CDC); Faye Malitz
(HRSA); Thomas Reilly (CMS); Effie George (CMS); David Dore (Brown
University); Mari Kitahata (University of Washington). The committee rec-
ognizes the following individuals from its open session meeting on July 8,
2011 (listed in order of their presentations): Jamie Ferguson (KP); William
Tierney (Indiana University School of Medicine); James Willig (Univer-
sity of Alabama, Birmingham). The committee recognizes the following
individuals from its open session meeting on September 1, 2011 (in order
of their presentations): Andrew Forsyth (HHS); Amy Lansky; Richard
Wolitski (CDC).
Throughout the course of this study, the committee received input
from outside sources that provided valuable information and resources
and thanks the following people for their contributions to the study: Ruth
Pederson (Colorado Health Network, Inc.); Richard Power (Bureau of
HIV/AIDS, Florida State Department of Health); Suzanne Kinsky, Vignetta
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xi
ACKNOWLEDGMENTS
Charles, and Maura Riordan (AIDS United); David Holtgrave and Cathy
Maulsby (Johns Hopkins University); Susan Scheer (San Francisco Depart-
ment of Public Health); Manya Magnus (George Washington University
School of Public Health and Health Services). Each of these individuals
provided valuable information that greatly helped with the development
of the report.
Finally, the committee acknowledges the support of the IOM staff, in
particular the efforts of Morgan Ford (study director) and Carol Mason
Spicer (associate program officer). In addition to planning and facilitating
the meetings, they wrote much of the text for this report. The committee
also appreciates the efforts of China Dickerson (senior program assistant,
November 2010–August 2011) and Colin F. Fink (senior program assistant,
August 2011–present) for attending to the logistical requirements for the
meetings and for aiding in the drafting of the report. The committee rec-
ognizes Rose Marie Martinez (director, Board on Population Health and
Public Health Practice) who attended meetings and aided greatly in the
discussion of the conclusions and recommendations. Additional staff sup-
port included assistance from: Hope Hare (administrative assistant), Amy
Przybocki (financial associate, November 2010–December 2011), Doris
Romero (financial associate, January 2012–present), Laura DeStefano (Of-
fice of Reports and Communication), and Florence Poillon (copy editor).
The staff acknowledges William McLeod (senior librarian, The National
Academies) who provided valuable research support at the onset of the
study.
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Contents
ABBREVIATIONS AND ACRONYMS xix
SUMMARY 1
1 INTRODUCTION 19
Study Context, 20
The Committee’s Approach to Its Charge, 31
Report Organization, 32
References, 33
2 INDICATORS RELATED TO CONTINUOUS HIV CARE
AND ACCESS TO SUPPORTIVE SERVICES 39
Indicators of Clinical HIV Care and Access to Mental Health,
Substance Abuse, and Supportive Services, 40
Health-Related Disparities, 71
Data Elements to Gauge the Impact of the NHAS and the ACA, 74
Conclusions and Recommendations, 88
References, 92
Chapter 2 Appendix Tables, 110
3 SOURCES OF DATA ON HIV CARE TO ASSESS INDICATORS
OF HIV CARE AND ACCESS TO SUPPORTIVE SERVICES 127
Identification of Data Systems, 127
Sources of HIV Care Data, 130
Additional Data Systems for Monitoring HIV Care, 158
xiii
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xiv CONTENTS
Similar Data Collection Efforts, 164
Conclusions and Recommendations, 167
References, 170
Chapter 3 Appendix Tables, 178
4 BARRIERS TO THE COLLECTION OF HIV CARE DATA 237
Potential Reimbursement-Related Barriers to the Collection of
HIV Care Data, 237
Potential Reporting-Related Barriers to the Collection of
HIV Care Data, 240
Other Policy Barriers to the Collection of HIV Care Data, 248
Conclusions and Recommendations, 264
References, 267
5 THE ROLE OF HEALTH INFORMATION TECHNOLOGY
AND DATA SYSTEM INTEGRATION IN THE
COLLECTION OF HIV CARE DATA 273
Utilization and Configuration of Health Information
Technology to Improve the Collection of HIV Care Data, 273
Models and Best Practices in Data System Integration, 286
Conclusions and Recommendations, 291
References, 292
6 EFFICIENT ANALYSIS OF HIV CARE INDICATORS AND
DISSEMINATION OF DATA BY FEDERAL AGENCIES 299
Efficient Analysis of HIV Care Indicators by Federal Agencies, 299
Dissemination of Data to Improve HIV Care Quality, 309
Conclusions and Recommendations, 315
References, 316
APPENDIX BIOGRAPHICAL SKETCHES OF COMMITTEE
MEMBERS 319
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Tables, Figures, and Boxes
TABLES
S-1 Core Indicators for Clinical HIV Care and Mental Health,
Substance Abuse, and Supportive Services, with Rationale, 10
1-1 Insurance at First Outpatient Visit for Patients Attending Adult Care
Sites in the HIV Research Network, CY2010, 23
2-1 HIV Care Quality Measures, 42
Appendix 2-1
Core and Additional Indicators for Clinical HIV Care and Mental
Health, Substance Abuse, and Supportive Services, 110
Appendix 2-2
Indicators of Clinical HIV Care and Mental Health, Substance
Abuse, and Supportive Services, Mapped to Entry and Engagement
in Care, 120
Appendix 2-3
Co-Occurring Conditions and Etiological Cofactors with Link to
Guidance for Optimal Management, 124
Appendix 3-1
Summary of Data Systems for Monitoring HIV Care Identified by
the Committee, 178
Appendix 3-2a
Data Elements for Core Clinical HIV Care Indicators, 202
xv
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xvi TABLES, FIGURES, AND BOXES
Appendix 3-2b
Data Elements for Core Mental Health, Substance Abuse, and
Supportive Services Indicators, 206
Appendix 3-2c
Data Elements for Additional Clinical HIV Care Indicators, 208
Appendix 3-2d
Data Elements for Additional Mental Health, Substance Abuse, and
Supportive Services Indicators, 214
Appendix 3-2e
Data Elements to Estimate Indicators for Subpopulations, 216
Appendix 3-2f
Additional Data Elements for Monitoring HIV Care, 218
Appendix 3-3a
Data Systems Mapped to Core Clinical HIV Care Indicators, 220
Appendix 3-3b
Data Systems Mapped to Core Mental Health, Substance Abuse,
and Supportive Services Indicators, 224
Appendix 3-3c
Data Systems Mapped to Additional Clinical HIV Care
Indicators, 226
Appendix 3-3d
Data Systems Mapped to Additional Mental Health, Substance
Abuse, and Supportive Services Indicators, 230
Appendix 3-4
Publicly Available Data Collection Instruments and
Information, 232
Appendix 3-5
CD4 and Viral Load Reporting by HIV Surveillance Reporting Area
(as of June 15, 2010), 234
4-1 HIV Testing and Reporting Policies, 242
4-2 Potential Eligibility Criteria for Care Coverage for PLWHA, by
Major Payer/Source, 250
4-3 Scope of State and Territorial Statutes and Regulations Governing
HIV-Related Information, 260
5-1 Descriptions of Health IT Products and Functionalities, 274
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xvii
TABLES, FIGURES, AND BOXES
FIGURES
S-1 Continuum of HIV care arrow mapped to indicators of HIV care
and supportive services, 6
2-1 Continuum of engagement in care, 48
2-2 Continuum of HIV care arrow, 48
2-3 Engagement in HIV care cascade, 49
2-4 Continuum of HIV care arrow mapped to indicators for HIV care
and supportive services, 70
4-1 Federal reporting requirements for core and supplemental HIV/
AIDS grant awards administered by state health department HIV/
AIDS directors, 247
BOXES
S-1 Statement of Task, 4
S-2 National HIV/AIDS Strategy Targets, 5
1-1 National HIV/AIDS Strategy Action Steps and Targets, 26
2-1 Healthy People 2020 Summary of Objectives: HIV, 45
2-2 PEPFAR Essential Reported Indicators, 46
3-1 Data Collection Activities Considered by the Committee, 129
4-1 HIPAA Privacy Rule–Covered Entities, 252
5-1 Key Considerations for the Adoption of Health IT by HIV Care
Providers, 279
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Abbreviations and Acronyms
ABC Abacavir
ACA Patient Protection and Affordable Care Act
ADAP AIDS Drug Assistance Program
ADR ADAP Data Report
AI/AN American Indian or Alaskan Native
AIDS acquired immune deficiency syndrome
AMPATH Academic Model Providing Access to Healthcare
APR Annual Progress Report
ARRA American Recovery and Reinvestment Act of 2009
ART antiretroviral therapy
ARV antiretroviral
ASPR Assistant Secretary for Preparedness and Response
BC British Columbia
BEMR Bureau of Prisons Electronic Medical Record
BOP Federal Bureau of Prisons
CAH critical access hospital
CAPER Consolidated Annual Performance Evaluation Report
CCR Clinical Case Registry
CCW Chronic Condition Data Warehouse
CD4 CD4+ T cell
CDC Centers for Disease Control and Prevention
CDS clinical decision support
CFAR Centers for AIDS Research
xix
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xx ABBREVIATIONS AND ACRONYMS
CFR Code of Federal Regulations
CHC community health center
CLIA Clinical Laboratory Improvement Amendments
CMS Centers for Medicare and Medicaid Services
CNICS CFAR Network of Integrated Clinical Systems
CNS central nervous system
CPOE computerized physician order entry
CRS Clinical Reporting System
ECHPP Enhanced Comprehensive HIV Prevention Planning
Project
EHR electronic health record
ELR electronic laboratory reporting system
EMR electronic medical record
eRx e-prescribing
FDA Food and Drug Administration
FPL federal poverty level
FQHC federally qualified health center
FQHCLA federally qualified health center “look-alike”
HAART highly active antiretroviral therapy
HAB HIV/AIDS Bureau
HBV hepatitis B virus
HCCI Health Care Cost Institute
HCV hepatitis C virus
HEARTH Homeless Emergency Assistance and Rapid Transition
to Housing Act of 2009
HHS U.S. Department of Health and Human Services
HIE health information exchange
HIPAA Health Insurance Portability and Accountability Act
HIRD® HealthCore Integrated Research Database
HITECH Health Information Technology for Economic and
Clinical Health
HITSP Healthcare Information Technology Standards Panel
(HHS)
HIV human immunodeficiency virus
HIVRN HIV Research Network
HMIS Homeless Management Information System
HMO health maintenance organization
HMS HIV Management System
HOPWA Housing Opportunities for Persons with AIDS
HPTN HIV Prevention Trials Network
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xxi
ABBREVIATIONS AND ACRONYMS
HPV human papillomavirus
HRSA Health Resources and Services Administration
HUD U.S. Department of Housing and Urban Development
ICD-9 International Classification of Diseases, Ninth
Revision
IDU injection drug use
IHS Indian Health Service
IOM Institute of Medicine
IQA Information Quality Act/Data Quality Act
IPW inverse-probability weighting
IT information technology
KFF Kaiser Family Foundation
KP Kaiser Permanente
LaPHIE Louisiana Public Health Information Exchange
LSU HCSD Louisiana State University Health Care Services
Division
MAX Medicaid Analytic eXtract
MCBS Medicare Current Beneficiary Survey
MCO managed care organization
MMP Medical Monitoring Project
MoCA Montreal Cognitive Assessment scale
MSA metropolitan statistical area
MSIS Medicaid Statistical Information System
MSM men who have sex with men
NA-ACCORD North American AIDS Cohort Collaboration on
Research and Design
NASTAD National Alliance of State and Territorial AIDS
Directors
NHAS National HIV/AIDS Strategy
NHSS National HIV Surveillance System
NIH National Institutes of Health
NJDHSS New Jersey Department of Health and Senior Services
NQF National Quality Forum
NRC National Research Council
NVSS National Vital Statistics System
NwHIN Nationwide Health Information Network
NYC DOHMH New York City Department of Health and Mental
Hygiene
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xxii ABBREVIATIONS AND ACRONYMS
OASIS Outcome and Assessment Information Set
OCR Office of Civil Rights
OI opportunistic infection
OMB Office of Management and Budget
ONAP White House Office of National AIDS Policy
ONC Office of the National Coordinator for Health
Information Technology
PACHA Presidential Advisory Council on HIV/AIDS
PCIP Primary Care Information Project (NYC DOHMH)
PCP pneumocystis jiroveci pneumonia
PEPFAR U.S. President’s Emergency Plan for AIDS Relief
PHI protected health information
PHR personal health record
PHS Public Health Service
PLWHA people living with HIV/AIDS
PRO patient-reported outcome
QSOA qualified service organization agreement
RHIO regional health information organization
RNA ribonucleic acid
RPMS Resource and Patient Management System
RSR Ryan White HIV/AIDS Program Service Report
SPNS Special Projects of National Significance
STD sexually transmitted disease
STI sexually transmitted infection
SUN Study to Understand the Natural History of HIV/AIDS
in the Era of Effective Therapy
TB tuberculosis
UAB University of Alabama at Birmingham
USDA U.S. Department of Agriculture
USPSTF U.S. Preventive Services Task Force
VA U.S. Department of Veterans Affairs
VHA Veterans Health Administration
VL Viral load
VistA Veterans Health Information Systems and Technology
Architecture
