Reassessment of the Department of
Veterans Affairs Airborne Hazards
and Open Burn Pit Registry
_____
Committee to Reassess the Department of
Veterans Affairs Airborne Hazards and Open
Burn Pit Registry
Board on Population Health and Public
Health Practice
Health and Medicine Division
Consensus Study Report
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001
This activity was supported by contracts between the National Academy of Sciences and the Department of Veterans Affairs (36C2420C0186). Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.
International Standard Book Number-13: 978-0-309-69423-0
International Standard Book Number-10: 0-309-69423-X
Digital Object Identifier: https://doi.org/10.17226/26729
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2022. Reassessment of the Department of Veterans Affairs Airborne Hazards and Open Burn Pit Registry. Washington, DC: The National Academies Press. https://doi.org/10.17226/26729.
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COMMITTEE TO REASSESS THE DEPARTMENT OF VETERANS AFFAIRS AIRBORNE HAZARDS AND OPEN BURN PIT REGISTRY
DAVID A. SAVITZ (Chair), Professor of Epidemiology, Brown University School of Public Health
JOHN R. BALMES, Professor of Medicine Emeritus, University of California San Francisco and Professor of Environmental Health Sciences Emeritus, School of Public Health, University of California, Berkeley
MICHELLE L. BELL, Mary E. Pinchot Professor of Environmental Health, Yale University
MICHAEL J. DANIELS, Andrew Banks Family Endowed Chair, Professor and Chair, Department of Statistics, University of Florida
MARIANTHI-ANNA KIOUMOURTZOGLOU, Associate Professor of Environmental Health Sciences, Columbia University Mailman School of Public Health
BHRAMAR MUKHERJEE, John D. Kalbfleisch Collegiate Professor of Biostatistics, Professor of Epidemiology, Professor of Global Public Health, Research Professor, University of Michigan
FRANCES M. MURPHY, President and Chief Executive Officer, Sigma Health Consulting, LLC
KRISTEN M. OLSON, Leland J. and Dorothy H. Olson Professor of Sociology and Director, Bureau of Sociological Research, University of Nebraska–Lincoln
TYLER C. SMITH, Professor and Statistical Epidemiologist, National University
Health and Medicine Division Staff
ANNE N. STYKA, Study Director, Senior Program Officer
ROBERTA WEDGE, Senior Program Officer (from August 2021)
AASHAKA A. SHINDE, Research Associate (from October 2021)
ALEXANDRA MCKAY, Senior Program Assistant (from March 2021)
CARY HAVER, Senior Program Officer (through July 2021)
ROSE MARIE MARTINEZ, Board Director, Board on Population Health and Public Health Practice
Consultants
JOSEPH GASPER, Westat
CAITLIN CARTER, Westat
CHRIS MANGLITZ, Westat
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Reviewers
This Consensus Study Report was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published report as sound as possible and to ensure that it meets the institutional standards for quality, 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 thank the following individuals for their review of this report:
VICTORIA ARRANDALE, University of Toronto
ROBERT A. BARISH, University of Illinois Chicago
PATRICK BREYSSE, National Center for Environmental Health/Agency for Toxic Substances and Disease Registry, Centers for Disease Control and Prevention
HERMAN GIBB, George Washington University
CHASE H. HARRISON, Harvard University
REBECCA HUBBARD, University of Pennsylvania
KENNETH W. KIZER, Stanford University and University of California, Davis
SUSAN PADDOCK, NORC at The University of Chicago
ARMISTEAD G. RUSSELL, Georgia Institute of Technology
MONICA SCHOCH-SPANA, Johns Hopkins University
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations of this report, nor did they see the final draft before its release. The review of this report was overseen by SANDRO GALEA, Boston University School of Public Health, and MARYELLEN L. GIGER, The University of Chicago Department of Radiology. They were responsible for making certain that an independent examination of this report was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the authoring committee and the National Academies.
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Preface
The impact of exposures encountered during military service, particularly during deployments, on the health of veterans and service members warrants sustained, intensive, rigorous attention, and the impact of airborne hazards and open burn pits remains at the forefront of those concerns. The committee appreciates that this was the basis for the congressional directive to develop the Airborne Hazards and Open Burn Pit (AH&OBP) Registry and that the Department of Veterans Affairs (VA) has conscientiously pursued its mission despite the considerable challenges in quickly developing and implementing a registry of this nature. Veterans and service members who incurred such exposures are highly deserving of information and health services based on their deployment histories. While it was a previous committee of the National Academies that provided the initial assessment and critique of the registry, the current committee has the charge to evaluate the ability of the AH&OBP Registry to perform the functions that Congress or VA specified or whether other sources of information are better able to fulfill a particular function. It is important at the outset to state that the committee strongly supports the need for continued research, surveillance, and health services that address the long-term impact of airborne hazards and open burn pit exposures and that we take seriously our charge to assess whether the registry is the most effective way to do so. Despite the laudable goals that were established for the AH&OBP Registry, where it falls short in its ability to provide a particular function or outcome, it is important to acknowledge this and seek other, more effective means of doing so. In the report that follows, the committee has not just examined the registry itself but the registry as a mechanism for responding effectively to veterans who have incurred these exposures.
The committee wishes to acknowledge the VA staff who responded to our many requests for information related to the registry: Dr. Eric Shuping, director, Post-9/11 Era Environmental Health Program, Post-Deployment Health Services, Department of Veterans Affairs; Dr. Michael Brumage, deputy chief consultant, Health Outcomes Military Exposures (HOME); Dr. Joe Salvatore, deputy director of operations, HOME; Dr. Michael Falvo, co-director, Airborne Hazards and Burn Pits Center of Excellence (AHBPCE); and Dr. Nisha Jani, epidemiologist, VA War Related Illness and Injury Study Center, VA New Jersey Health Care System. The committee is grateful to the many experts who presented and provided materials during and after the committee’s open sessions, including Dr. Shuping, who presented an overview of the AH&OBP Registry and the committee’s charge at our December 8, 2020, open session; Mr. Steven P. Jones, director, Force Readiness and Health Assurance Policy, Office of Deputy Assistant Secretary for Health Readiness Policy & Oversight, Department of Defense, and Mr. Larry Vandergrift II, Individual Longitudinal Exposure Record (ILER) project manager, Solution Delivery Division, Defense Health Agency, Clinical Support Management Office, who, together with Dr. Shuping, presented an overview of ILER
at our April 14, 2021 open session; Dr. Mark R. Farfel, director, World Trade Center Health Registry (WTCHR), New York City Department of Health and Mental Hygiene, Dr. James Cone, the medical director of WTCHR, and Dr. Robert Brackbill, WTCHR research director, who all presented an overview of the WTCHR; Dr. Rudy Rull, principal investigator, Millennium Cohort Study at Naval Health Research Center, and Dr. Edward J. Boyko, VA Puget Sound, director of VA’s Seattle Epidemiologic Research and Information Center and chair of VA Cooperative Study #505—The Millennium Cohort Study, who described the current status of data collection of the Millennium Cohort Study; and Dr. Falvo and Dr. Jani, who discussed the scope of the Airborne Hazards and Burn Pits Center of Excellence at our June 23, 2021, open session.
The data analyses contained in this report were performed by the research corporation Westat under the direction of the committee. The committee greatly benefited from the work performed by Dr. Joseph Gasper, Mr. Chris Manglitz, and Ms. Caitlin Carter and very much appreciates their rigor, their willing and able responses to repeated requests, and the clarity of the presented results.
Finally, we need to give a great deal of credit to the Health and Medicine Division staff who contributed profoundly to the committee’s report. The value of the support and leadership of Ms. Anne Styka in particular cannot be overstated, along with her extremely capable and conscientious colleagues, Ms. Roberta Wedge, Ms. Cary Haver, and Ms. Aashaka Shinde. They provided a critical understanding of the past work on other reports, kept the committee focused on its task of fully responding to the charge, and, more broadly, informed and guided the committee’s work without constraining its conclusions. The committee also thanks Ms. Alexandra McKay for generously and capably providing logistical support during and between its in-person, hybrid, and virtual meetings. The manner in which the Academies staff and committee members worked together was exemplary. A thank you is also extended to Ms. Misrak Dabi, financial business partner for this project; Dr. Michael Cohen, Ms. Rebecca Chevat, and Dr. Gillian Buckley, who assisted the committee on various aspects of the report; Ms. Anne Marie Houppert, senior librarian who assisted the committee with comprehensive literature searches; and Mr. Robert Pool, who assisted the committee with editing the report.
David A. Savitz, Chair
Committee to Reassess the Department of Veterans Affairs
Airborne Hazards and Open Burn Pit Registry
Contents
Committee’s Approach and Overall Recommendations
AH&OBP Registry Questionnaire and Data Analysis
Use for Population Health Surveillance
Informing VA Policies and Processes
Supporting Communications and Outreach
National Academies’ Reports on Airborne Hazards
Legislative Changes to the AH&OBP Registry Since 2017
Interpretation of the Statement of Task
Considerations of Exposure Registry Data
3 AIRBORNE HAZARDS AND OPEN BURN PIT REGISTRY DEVELOPMENT AND OPERATIONS
Indicators of Questionnaire Data Quality
Initial Assessment Recommendations
4 OTHER INFORMATION SOURCES ON AIRBORNE HAZARDS
World Trade Center Health Registry
Individual Longitudinal Exposure Record
Epidemiologic Cohorts of Service Members and Veterans
Application to the Committee’s Statement of Task
Current Use of AH&OBP Registry Data
Characteristics of an Exposure Registry to be Used in Etiologic Research
Alternative Sources for Conducting Etiologic Research on Airborne Hazards Exposures
Initial Assessment Recommendations
6 USE FOR POPULATION HEALTH SURVEILLANCE
Definition and Requirements for Effective Public Health Surveillance
Current Use of the AH&OBP Registry for Surveillance
Assessment of the AH&OBP Registry as a Population Health Surveillance System
Alternative Sources for Population Health Surveillance Or Monitoring
7 USE TO IMPROVE CLINICAL CARE
Use of the AH&OBP Registry to Improve Health Care
Approaches to Improve Access to and Use of Health Care Services
8 USE FOR INFORMING VA POLICIES AND PROCESSES
9 USE FOR SUPPORTING COMMUNICATIONS AND OUTREACH
Initial Assessment Committee’s Findings
HOME’s Communication and Outreach Activities
Communications and Outreach From VA to Potential Registry Participants
Communications and Outreach from VA to Registry Participants
Communications and Outreach from VA and DoD to their Health Care Providers and Other Communicators
Communications from Registry Participants to VA
Communication and Outreach from VA to Other Stakeholders
The World Trade Center Health Registry
Initial Assessment Recommendation
Annex: Health Outcomes Military Exposures Broad Communications Plan
10 FUTURE USE OF THE AH&OBP REGISTRY
Use for Population Health Surveillance
Use for Supporting VA Policies and Processes
Use for Supporting Communications and Outreach
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Boxes, Figures, and Tables
BOXES
S-1 Committee’s Statement of Task
1-1 Initial Assessment Committee Recommendations
1-2 Committee’s Statement of Task
2-1 Literature Search Parameters
2-3 Registry Dataset Variables Imported from Other Sources
6-1 Dimensions of Public Health Surveillance
6-2 Common Surveillance System Attributes for Evaluation
6-3 Example: Beryllium-Associated Worker Registry
6-4 Example: Occupational Surveillance using the Ontario Cancer Registry
9-1 Selected HOME Outreach Activities
10-1 Recommendations to the VA Under Secretary of Health to Improve the AH&OBP Registry
FIGURES
2-1 Distribution of deployments of registry participants by user-entered status
4-1 Example of an individual’s exposure summary as it appears in ILER
7-1 Process for requesting and receiving an AH&OBP Registry health evaluation
TABLES
2-1 Limitations of Registries and Their Potential Effects
2-2 Number of AH&OBP Registry Participants by Era of Service
2-3 Countries and Areas of Deployment by Participants and Eligible Segments
2-5 Percent Distribution of Various Characteristics of Early and Late Participants
2-6 Percent User-Entered Deployments by Country of Deployment and Post-9/11
2-8 Frequency and Item Nonresponse of Short-Duration Deployments
2-9 Distribution of Time to Complete the AH&OBP Registry Questionnaire
2-11 Last Questionnaire Section Viewed Among Eligible Noncompleters
2-14 Types of Cancer Diagnoses Reported
2-18 Percentage of Self-Reported Exposure to Burn Pits on Deployment by Location Cohort
3-1 Selected Timeline of the AH&OBP Registry
3-3 Number of Exposures Reported by Early and Late Participants
3-4 Number of Reported Health Conditions of Early and Late Participants
3-5 Nonresponse Rate for Core Exposure and Health Outcome Questions
3-6 Type of Nonresponse (Missing, Do Not Wish to Answer, Don’t Know) by Question
3-9 Number of Years between Questionnaire Completion and Deployment, by Early and Late Participants
4-1 Gulf War Registry Demographic Characteristics by Study Group
4-3 Response Rates for Initial Enrollment and Follow-Up Surveys for Millennium Cohort Study Panels
5-1 Examples of Limitations of Potential Comparison Populations
5-2 Number of Years between Last Deployment and Questionnaire Completion
5-3 Comparison of Self-Reported Health Conditions with VA Medical Records
5-4 Hobbies on the AH&OBP Registry Self-Assessment Questionnaire Reported by Participants
6-1 Examples of National Population Health Surveillance Systems or Surveys
7-1 Number of Veterans and Veterans Health Administration Users by Era, 2010–2019
7-3 AH&OBP Registry Participants by Calendar Year
7-5 Time between Registry Questionnaire Completion and Date of Health Evaluation
7-7 Most Prevalent ICD-10 Diagnostic Codes Among AH&OBP Registry Participants
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Acronyms and Abbreviations
AHBPCE | Airborne Hazards and Burn Pits Center of Excellence |
AH&OBP | Airborne Hazards and Open Burn Pit |
AHRQ | Agency for Healthcare Research and Quality |
AIMES | AHBPCE IQuEST Military Exposure Surveillance |
ATSDR | Agency for Toxic Substances and Disease Registry |
BRFSS | Behavioral Risk Factor Surveillance System |
CDC | Centers for Disease Control and Prevention |
CDMRP | Congressionally Directed Medical Research Programs |
CDW | Corporate Data Warehouse |
CI | confidence interval |
COPD | chronic obstructive pulmonary disease |
CTS | Contingency Tracking System |
DEERS | Defense Enrollment Eligibility Reporting System |
DMDC | Defense Manpower and Data Center |
DMSS | Defense Medical Surveillance System |
DoD | Department of Defense |
DOEHRS-IH | Defense Occupational and Environmental Health Readiness System—Industrial Hygiene |
EHR | electronic health record |
FY | fiscal year |
GPS | global positioning system |
HIPAA | Health Insurance Portability and Accountability Act |
HOME | Health Outcomes Military Exposures |
ICD-9 | International Classification of Diseases, Ninth Revision |
ICD-10 | International Classification of Diseases, Tenth Revision |
IED | improvised explosive device |
ILER | Individual Longitudinal Exposure Record |
IOM | Institute of Medicine |
IQuEST | Center for Innovations in Quality, Effectiveness and Safety |
IT | information technology |
MESL | Military Exposure Surveillance Library |
NASEM | National Academies of Sciences, Engineering, and Medicine |
NDAA | National Defense Authorization Act |
NHANES | National Health and Nutrition Examination Survey |
NHIS | National Health Interview Survey |
NHS | National Health Survey of Gulf War Veterans and Their Families |
NIEHS | National Institute of Environmental Health Sciences |
NIH | National Institutes of Health |
NIOSH | National Institute for Occupational Health and Safety |
OEF | Operation Enduring Freedom |
OFS | Operation Freedom’s Sentinel |
OIF | Operation Iraqi Freedom |
OIG | Office of Inspector General |
OIR | Combined Joint Task Force-Operation Inherent Resolve |
OMB | Office of Management and Budget |
OND | Operation New Dawn |
OR | odds ratio |
PDCEN | Post-Deployment Cardiopulmonary Evaluation Network |
PL | public law |
POEMS | Periodic Occupational and Environmental Monitoring Summary |
PTSD | posttraumatic stress disorder |
SAQ | self-assessment questionnaire |
SEER | Surveillance, Epidemiology, and End Results Program |
SME | subject-matter expert |
STAMPEDE | Study of Active Duty Military for Pulmonary Disease Related to Environmental Deployment Exposures |
USVETS | United States Veterans Eligibility Trends and Statistics |
VA | Department of Veterans Affairs |
VADIR | Veterans Affairs/Department of Defense Identity Repository |
VET-HOME | Veteran Environmental Team Health Outcomes Military Exposures |
VHA | Veterans Health Administration |
VINCI | Veterans Affairs Informatics and Computing Infrastructure |
VISN | Veterans Integrated Services Network |
VSO | veteran service organization |
WRIISC | War Related Illness and Injury Study Center |
WTCHR | World Trade Center Health Registry |