National Academies Press: OpenBook
Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: Indicators and Data Systems. Washington, DC: The National Academies Press. doi: 10.17226/13225.
×

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

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: Indicators and Data Systems. Washington, DC: The National Academies Press. doi: 10.17226/13225.
×

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

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: Indicators and Data Systems. Washington, DC: The National Academies Press.

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: Indicators and Data Systems. Washington, DC: The National Academies Press. doi: 10.17226/13225.
×

“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: Indicators and Data Systems. Washington, DC: The National Academies Press. doi: 10.17226/13225.
×

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: Indicators and Data Systems. Washington, DC: The National Academies Press. doi: 10.17226/13225.
×

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: Indicators and Data Systems. Washington, DC: The National Academies Press. doi: 10.17226/13225.
×

      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

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: Indicators and Data Systems. Washington, DC: The National Academies Press. doi: 10.17226/13225.
×

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

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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.

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: Indicators and Data Systems. Washington, DC: The National Academies Press. doi: 10.17226/13225.
×

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

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: Indicators and Data Systems. Washington, DC: The National Academies Press. doi: 10.17226/13225.
×

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

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: Indicators and Data Systems. Washington, DC: The National Academies Press. doi: 10.17226/13225.
×

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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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

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: Indicators and Data Systems. Washington, DC: The National Academies Press. doi: 10.17226/13225.
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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

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Monitoring HIV Care in the United States: Indicators and Data Systems. Washington, DC: The National Academies Press. doi: 10.17226/13225.
×

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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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

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The number of people living with HIV/AIDS (PLWHA) in the United States is growing each year largely due both to advances in treatment that allow HIV-infected individuals to live longer and healthier lives and due to a steady number of new HIV infections each year. The U.S. Centers for Disease Control and Prevention (CDC) estimates that there were 1.2 million people living with HIV infection in the United States at the end of 2008, the most recent year for which national prevalence data are available. Each year, approximately 16,000 individuals die from AIDS despite overall improvements in survival, and 50,000 individuals become newly infected with HIV. In 2011, the CDC estimated that about three in four people living with diagnosed HIV infection are linked to care within 3 to 4 months of diagnosis and that only half are retained in ongoing care.

In the context of the continuing challenges posed by HIV, the White House Office of National AIDS Policy (ONAP) released a National HIV/AIDS Strategy (NHAS) for the United States in July 2010. The primary goals of the NHAS are to: reduce HIV incidence; increase access to care and optimize health outcomes; and reduce HIV-related health disparities.

Monitoring HIV Care in the United States addresses existing gaps in the collection, analysis, and integration of data on the care and treatment experiences of PLWHA. This report identifies critical data and indicators related to continuous HIV care and access to supportive services, assesses the impact of the NHAS and the ACA on improvements in HIV care, and identifies public and private data systems that capture the data needed to estimate these indicators. In addition, this report addresses a series of specific questions related to the collection, analysis, and dissemination of such data.

Monitoring HIV Care in the United States is the first of two reports to be prepared by this study. In a forthcoming report, also requested by ONAP, the committee will address the broad question of how to obtain national estimates that characterize the health care of people living with HIV in the United States. The second report will include discussion of challenges and best practices from previous large scale and nationally representative studies of PLWHA as well as other populations.

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