Registry uses questionnaires that are too difficult to answer and make it useless for research about toxic exposure, according to a recent report from a private nonprofit institute.
A Department of Veterans Affairs registry used to track illnesses from burn pits and help garner treatment for sick veterans uses questionnaires that are too difficult to answer and make it useless for research about toxic exposure, according to a recent report from a private nonprofit institute.
"The health problems experienced by the many veterans who deployed to Southwest Asia warrant sustained and rigorous attention and need to be addressed, but the [VA's] Airborne Hazards and Open Burn Pit Registry is not the right mechanism to meet all the needs," said David Savitz, professor of epidemiology at Brown University’s School of Public Health and chairman of the committee that wrote the report.
The report from the National Academies of Sciences, Engineering, and Medicine — dubbed "Reassessment of the Department of Veterans Affairs Airborne Hazards and Open Burn Pit Registry” — found the registry in its current iteration could not fulfill its purpose of supporting research of the cause or origin of a veteran's disease or condition. It also said the registry could not monitor the population exposed to airborne hazards.
Throughout the 1990s and the post-9/11 wars, the military used open-air pits to burn garbage, jet fuel, paint, medical waste, plastics and other materials. Veterans diagnosed with cancer, respiratory issues and lung disease at young ages have blamed exposure to toxic fumes.
In January 2013, then-President Barack Obama signed the Dignified Burial and Veterans' Benefits Improvement Act of 2012 into law. Included in the law was the VA's requirement to establish a registry to help service members and veterans report exposures to airborne hazards such as burn pits, oil well fires, and other forms of pollution and document their health problems.
The VA's Airborne Hazards and Open Burn Pit Registry rolled out in June 2014. It was designed to help the agency monitor the health of veterans, research the cause or origin of a veteran's disease or condition, improve care, support the agency's processes such as benefits claims and programs, and provide outreach to veterans, health care providers and other stakeholders.
The law also required an independent scientific organization provide reports on the VA registry to determine and monitor the health effects of veterans and service members' exposure to toxins and its public information campaign about the registry. The VA chose and sponsored the National Academies of Sciences, Engineering, and Medicine to assess the registry and conduct the reports.
The first report was released in 2017 and was the initial assessment of the registry. The report addressed the VA's registry issues and data usage and reviewed the self-assessment questionnaire.
The second report, released Friday, focuses on the reassessment of the registry. It assessed how the VA and the Defense Department collect and maintain the registry's data regarding a veteran's health effects due to toxic exposure and whether the registry has fulfilled or can carry out the purpose.
More than 3.7 million veterans and service members are eligible to enroll in the registry. As of July 1, more than 317,000 veterans have enrolled in the registry and completed the questionnaire, which includes 140 questions. Fifty percent of the 317,000 have requested an optional registry health evaluation, but only 30,000 participants have received the health evaluation. Furthermore, more than 130,000 veterans have begun their enrollment into the registry but have not yet completed it.
Kristen Olson, director of the University of Nebraska–Lincoln's Bureau of Sociological Research and a member of the reassessment committee, said Friday during a virtual public briefing on the report that the process to enroll in the registry was cumbersome and veterans had to go through various steps to become a registry participant. Once they're in the questionnaire, the questions, which are quite lengthy, are not easy to complete or answer.
"The more deployments you have had, the longer it will take to complete the questionnaire," she said. "Many veterans don't know the information asked about in the questionnaire and … don't know or refuse to answer the question altogether."
As for monitoring veterans' health, Olson said, the registry collects data from participants only once. Veterans also cannot update their health information in the registry, which she said makes it impossible to track emerging health problems from the same person over time.
"While the health evaluation may enhance a veteran's knowledge of their health status, it does not improve their access to or continuity of health care," the report said.
The report also found the VA does not use the registry for its internal policy decisions. Moreover, the Veterans Benefits Administration claims the review process is separate from a veteran's registry. While a veteran can use answers from their questionnaire and health care evaluation results to support a disability claim, the registry evaluation does not replace the disability claim examination.
As for the registry's use for research, Olson said it has major design and data quality issues that cannot be overcome.
"Even making substantial changes to the questionnaire for the registry wouldn't be enough to make the registry appropriate for etiological research of airborne hazards, exposures and health outcomes," she said.
This isn't the first report to criticize the registry's questionnaire. In July, the VA Office of Inspector General released a report that found the questionnaire was not clear. The report also found more than 106,000 veterans interested in having a burn pit registry health evaluation either did not schedule or complete the exams, and did not realize they were responsible for scheduling their own exams.
Terrence Hayes, the VA's press secretary, said the time is right to redesign the registry for the better. He also said the National Academies of Sciences, Engineering, and Medicine report, in addition to the one from the VA inspector general, provides the agency direction and guidance to improve the registry to better serve veterans exposed to respiratory hazards.
"VA will explore all options when building the next registry to ensure it delivers for veterans who served in Southwest Asia," Hayes said. "VA's goal for the registry is to provide information to enhance health care access and quality for veterans with respiratory exposures. The registry can also serve as a communication pathway for veterans and their health care providers to address concerns with respect to respiratory hazards."
- Veterans Healthcare