Epidemiological research based on recent cancer registry data may "forever
require an asterisk, or perhaps a sticker on the cover, to remind researchers
and the public that they are not correct," warns Deapen.
require an asterisk, or perhaps a sticker on the cover, to remind researchers
and the public that they are not correct," warns Deapen.
VA withholds data for up to 70,000 veteran cases a year from US cancer registries
September 4, 2007—The US Veterans Administration
(VA) has withheld data from state cancer registries
across the US, experts say, causing up to 70,000
newly diagnosed cancer cases to go uncounted each
year.
According to an unpublished California cancer
surveillance agency report, VA hospitals stopped
reporting cancers to California registries in late 2004.
“Statewide and national data will be incomplete and
inaccurate,” says Kurt Snipes of the Cancer Surveill-
ance Branch of the California Department of Health
Services in Sacramento. Up to 5 percent of cancers
in California are diagnosed at VA hospitals, Snipes
says.
VA officials say they are protecting veterans' privacy,
yet continue to report non-cancer diagnoses like
HIV/AIDS to state registries, and
continue to report cancers to many
state registries.
As reported in the September
issue of The Lancet Oncology,
the VA has also refused to allow
state health officials to conduct
routine case-finding audits at VA
hospitals.
Reda Wilson of the Centers for Disease Control
(CDC) in Atlanta says that in 13 states, at least one
VA hospital is no longer reporting cancer cases. VA
reporting has been "inconsistent" in an additional 14
states, she says. Florida's cancer registry has never
received VA data. VA officials report that 29 veterans
hospitals withheld cancer data in 2006.
“40,000 to 70,000 cases are potentially missed
nationally each year,” Wilson estimates. As a result,
US rates for prostate, lung, bronchus and colorectal
cancers may be significantly underestimated.
“Surveillance, geographic or cluster information, and
research mandated by law will be affected,” reports
Dennis Deapen of the Los Angeles Cancer
Surveillance Program. The National Cancer Institute
(NCI) and other national surveillance organizations
report that nationwide cancer rate estimates next
year will be artificially low.
Last year, Deapen warned colleagues at a meeting of
cancer surveillance professionals that omission of
veteran data could introduce “uncorrectable bias” in
epidemiological studies. “Research from the mid-
2000s will forever require an asterisk,” he predicted,
“or perhaps a sticker on the cover, to remind
researchers and the public that they are not correct."
Officials at numerous state cancer registries, the NCI,
CDC, American Cancer Society, and other cancer
surveillance organizations report that all efforts to
resolve the problem with VA officials have met with
failure.
“We’ve been working with the VA for more than 5
years, but it’s just gotten worse,” says Holly Howe of
the North American Association of Central Cancer
Registries.
Last year, registry officials sought unsuccessfully to
convince the US Department of Health and Human
Services (HHS), which oversees the VA, to intervene.
(VA) has withheld data from state cancer registries
across the US, experts say, causing up to 70,000
newly diagnosed cancer cases to go uncounted each
year.
According to an unpublished California cancer
surveillance agency report, VA hospitals stopped
reporting cancers to California registries in late 2004.
“Statewide and national data will be incomplete and
inaccurate,” says Kurt Snipes of the Cancer Surveill-
ance Branch of the California Department of Health
Services in Sacramento. Up to 5 percent of cancers
in California are diagnosed at VA hospitals, Snipes
says.
VA officials say they are protecting veterans' privacy,
yet continue to report non-cancer diagnoses like
HIV/AIDS to state registries, and
continue to report cancers to many
state registries.
As reported in the September
issue of The Lancet Oncology,
the VA has also refused to allow
state health officials to conduct
routine case-finding audits at VA
hospitals.
Reda Wilson of the Centers for Disease Control
(CDC) in Atlanta says that in 13 states, at least one
VA hospital is no longer reporting cancer cases. VA
reporting has been "inconsistent" in an additional 14
states, she says. Florida's cancer registry has never
received VA data. VA officials report that 29 veterans
hospitals withheld cancer data in 2006.
“40,000 to 70,000 cases are potentially missed
nationally each year,” Wilson estimates. As a result,
US rates for prostate, lung, bronchus and colorectal
cancers may be significantly underestimated.
“Surveillance, geographic or cluster information, and
research mandated by law will be affected,” reports
Dennis Deapen of the Los Angeles Cancer
Surveillance Program. The National Cancer Institute
(NCI) and other national surveillance organizations
report that nationwide cancer rate estimates next
year will be artificially low.
Last year, Deapen warned colleagues at a meeting of
cancer surveillance professionals that omission of
veteran data could introduce “uncorrectable bias” in
epidemiological studies. “Research from the mid-
2000s will forever require an asterisk,” he predicted,
“or perhaps a sticker on the cover, to remind
researchers and the public that they are not correct."
Officials at numerous state cancer registries, the NCI,
CDC, American Cancer Society, and other cancer
surveillance organizations report that all efforts to
resolve the problem with VA officials have met with
failure.
“We’ve been working with the VA for more than 5
years, but it’s just gotten worse,” says Holly Howe of
the North American Association of Central Cancer
Registries.
Last year, registry officials sought unsuccessfully to
convince the US Department of Health and Human
Services (HHS), which oversees the VA, to intervene.
Public Health Surveillance
Veterans hospitals in 13 states are not reporting cases to state registries and are preventing state health officials
from conducting case-finding audits, threatening the validity of epidemiological research and US cancer statistics
from conducting case-finding audits, threatening the validity of epidemiological research and US cancer statistics
| Story Links California Cancer Surveillance Program's internal report on the impact of VA cancer case withholding on the accuracy of cancer statistics The VA's new data sharing agreement The Lancet Oncology home page |
VA officials emphasize that as a federal
agency, state cancer reporting laws do not
apply to them.
"It is beginning to sound like a witch hunt by
the national [cancer surveillance] standards
setters to punish the VA for not subordinating
itself to them," says Raye-Ann Dorn, the VA’s
national coordinator for cancer programs.
"Their primary beef is that the VA said no to
their strong arm tactics and has the audacity
to protect our patients' private health
information from inappropriate invasions of
their privacy," she says. "The VA is a federal
department with full authority to develop and
implement policy for its affairs."
Work is now under way at NCI and state
cancer registries to devise statistical
corrections that can accommodate the
missing veteran cancers and minimize the
impact on the estimation of US cancer rates.
The VA has issued a new data sharing
agreement that prevents state cancer
officials from sharing veteran cancer data with
epidemiologists unless the VA preapproves
the research. Registry officials who violate the
new agreement will face criminal sanctions
and fines.
Snipes says California will stop sharing VA
data with researchers for the time being. But
he will continue to work toward an agreement
that will allow the use of VA cases in studies
by non-VA researchers—a particularly critical
issue for studies of cancer rates and risk
factors in veteran populations.
Understanding veterans' cancer risks involves
asking vets about their exposures,
experiences and deployments, says Deapen,
but the new VA rules do not allow researchers
to contact veterans.
agency, state cancer reporting laws do not
apply to them.
"It is beginning to sound like a witch hunt by
the national [cancer surveillance] standards
setters to punish the VA for not subordinating
itself to them," says Raye-Ann Dorn, the VA’s
national coordinator for cancer programs.
"Their primary beef is that the VA said no to
their strong arm tactics and has the audacity
to protect our patients' private health
information from inappropriate invasions of
their privacy," she says. "The VA is a federal
department with full authority to develop and
implement policy for its affairs."
Work is now under way at NCI and state
cancer registries to devise statistical
corrections that can accommodate the
missing veteran cancers and minimize the
impact on the estimation of US cancer rates.
The VA has issued a new data sharing
agreement that prevents state cancer
officials from sharing veteran cancer data with
epidemiologists unless the VA preapproves
the research. Registry officials who violate the
new agreement will face criminal sanctions
and fines.
Snipes says California will stop sharing VA
data with researchers for the time being. But
he will continue to work toward an agreement
that will allow the use of VA cases in studies
by non-VA researchers—a particularly critical
issue for studies of cancer rates and risk
factors in veteran populations.
Understanding veterans' cancer risks involves
asking vets about their exposures,
experiences and deployments, says Deapen,
but the new VA rules do not allow researchers
to contact veterans.
Story Elements
|
"Both of my parents were military veterans,"
he notes. "They're now excluded from
participating in [epidemiological] research.
It doesn't seem right to me that they do not
have a choice to participate like everybody
else."
Under current VA rules, only VA-approved
studies can utilize veteran cancer data
found in state registries. Independent
studies of veterans' cancer risks may no
longer be possible under the new rules,
registry officials worry.
Cancer surveillance experts remain hopeful
that a compromise can be reached. “We
need everybody in the room at one
time—medical, epidemiology and legal
experts," says Elizabeth Ward of the
American Cancer Society. “We need to
work together to move ahead.”
News of the VA's withholding of veteran
cancer data comes just as media reports
have begun to raise questions about
cancer rates among veterans of the conflict
in Iraq, and as the VA itself completes an
effort to identify Gulf War veteran cancers
using state cancer registries. Some state
cancer registry officials have refused to
participate in the Gulf War study, citing
concerns about its validity in light of the
VA's failure to report thousands of cancers
to the very registries the VA is now using to
estimate Gulf War cancer rates.
Han Kang, director of the VA Environmental
Epidemiology Service in Washington, DC,
failed to respond to numerous phone calls
and emails. However, a colleague
indicates that Kang may be able to access
VA case data that has not been released to
state cancer registries.
he notes. "They're now excluded from
participating in [epidemiological] research.
It doesn't seem right to me that they do not
have a choice to participate like everybody
else."
Under current VA rules, only VA-approved
studies can utilize veteran cancer data
found in state registries. Independent
studies of veterans' cancer risks may no
longer be possible under the new rules,
registry officials worry.
Cancer surveillance experts remain hopeful
that a compromise can be reached. “We
need everybody in the room at one
time—medical, epidemiology and legal
experts," says Elizabeth Ward of the
American Cancer Society. “We need to
work together to move ahead.”
News of the VA's withholding of veteran
cancer data comes just as media reports
have begun to raise questions about
cancer rates among veterans of the conflict
in Iraq, and as the VA itself completes an
effort to identify Gulf War veteran cancers
using state cancer registries. Some state
cancer registry officials have refused to
participate in the Gulf War study, citing
concerns about its validity in light of the
VA's failure to report thousands of cancers
to the very registries the VA is now using to
estimate Gulf War cancer rates.
Han Kang, director of the VA Environmental
Epidemiology Service in Washington, DC,
failed to respond to numerous phone calls
and emails. However, a colleague
indicates that Kang may be able to access
VA case data that has not been released to
state cancer registries.
