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
INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES
THE NATIONAL ACADEMIES PRESS
Washington, D.C.
www.nap.edu
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: 978-0-309-21850-4
International Standard Book Number-10: 0-309-21850-0
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Copyright 2012 by the National Academy of Sciences. All rights reserved.
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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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Willing is not enough; we must do.”
—Goethe
INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES
Advising the Nation. Improving Health.
THE NATIONAL ACADEMIES
Advisers to the Nation on Science, Engineering, and Medicine
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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
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
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
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.
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.
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 Prevention 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 medical 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
Research and Design (NA-ACCORD); Amy Lansky (CDC) for the National 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 Information 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 Condition 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 sessions. 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 recognizes 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 (University 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
Charles, and Maura Riordan (AIDS United); David Holtgrave and Cathy Maulsby (Johns Hopkins University); Susan Scheer (San Francisco Department 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 recognizes 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 support included assistance from: Hope Hare (administrative assistant), Amy Przybocki (financial associate, November 2010–December 2011), Doris Romero (financial associate, January 2012–present), Laura DeStefano (Office 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
The Committee’s Approach to Its Charge
2 INDICATORS RELATED TO CONTINUOUS HIV CARE AND ACCESS TO SUPPORTIVE SERVICES
Data Elements to Gauge the Impact of the NHAS and the ACA
Conclusions and Recommendations
3 SOURCES OF DATA ON HIV CARE TO ASSESS INDICATORS OF HIV CARE AND ACCESS TO SUPPORTIVE SERVICES
Similar Data Collection Efforts
Conclusions and Recommendations
4 BARRIERS TO THE COLLECTION OF HIV CARE DATA
Potential Reimbursement-Related Barriers to the Collection of HIV Care Data
Potential Reporting-Related Barriers to the Collection of HIV Care Data
Other Policy Barriers to the Collection of HIV Care Data
Conclusions and Recommendations
Models and Best Practices in Data System Integration
Conclusions and Recommendations
6 EFFICIENT ANALYSIS OF HIV CARE INDICATORS AND DISSEMINATION OF DATA BY FEDERAL AGENCIES
Efficient Analysis of HIV Care Indicators by Federal Agencies
Dissemination of Data to Improve HIV Care Quality
Data Elements for Core Mental Health, Substance Abuse, and Supportive Services Indicators
Data Elements for Additional Clinical HIV Care Indicators
Data Elements for Additional Mental Health, Substance Abuse, and Supportive Services Indicators
Data Elements to Estimate Indicators for Subpopulations
Additional Data Elements for Monitoring HIV Care
Data Systems Mapped to Core Clinical HIV Care Indicators
Data Systems Mapped to Core Mental Health, Substance Abuse, and Supportive Services Indicators
Data Systems Mapped to Additional Clinical HIV Care Indicators
Data Systems Mapped to Additional Mental Health, Substance Abuse, and Supportive Services Indicators
Publicly Available Data Collection Instruments and Information
CD4 and Viral Load Reporting by HIV Surveillance Reporting Area (as of June 15, 2010)
4-1 HIV Testing and Reporting Policies
4-2 Potential Eligibility Criteria for Care Coverage for PLWHA, by Major Payer/Source
4-3 Scope of State and Territorial Statutes and Regulations Governing HIV-Related Information
FIGURES
S-1 Continuum of HIV care arrow mapped to indicators of HIV care and supportive services
2-1 Continuum of engagement in care
2-2 Continuum of HIV care arrow
2-3 Engagement in HIV care cascade
2-4 Continuum of HIV care arrow mapped to indicators for HIV care and supportive services
BOXES
S-2 National HIV/AIDS Strategy Targets
1-1 National HIV/AIDS Strategy Action Steps and Targets
2-1 Healthy People 2020 Summary of Objectives: HIV
2-2 PEPFAR Essential Reported Indicators
3-1 Data Collection Activities Considered by the Committee
4-1 HIPAA Privacy Rule–Covered Entities
5-1 Key Considerations for the Adoption of Health IT by HIV Care Providers
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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 |
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 |
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 |
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 |