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



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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 International Standard Book Number-10: 0-309-21850-0 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 ad- opted 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: 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 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 en- gineers. 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 engineer- ing programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is presi- dent 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 Insti- tute 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 Sci- ences 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 Coun- cil 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

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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