VA Cancer Data Blockade May Imperil Surveillance

[indigo girl]

http://www.medpagetoday.com/InfectiousDisease/PublicHealth/tb/6563

(hat tip Effect Measure)

Stonewalling by the Veterans Administration is putting U.S. cancer surveillance and research in jeopardy, according to many of the researchers involved in those fields.

After decades of sharing data freely and allowing researchers to get in touch with its patients, the agency has been blocking such activity for the past several years, according to Dennis Deapen, Dr.PH., of the Los Angeles Cancer Surveillance Program and the University of Southern California.

...it's not just California -- it's nearly every state,"

However, California and Florida -- where VA reporting of cancer cases has also been blocked -- have large populations of veterans and large VA medical facilities...

Missing data from those two states has the potential to warp national estimates...

... VA officials pointed out that of the 130 medical centers that collect cancer data, only 29 withheld cases from state cancer registries in 2006.

... according to CDC data, VA centers in seven states are not reporting cancer cases and in six others, at least one VA facility is not reporting.

All told, "40 000 to 70 000 cases are potentially missed nationally each year," the journal quoted a CDC spokesman.

Dr. Howe said her organization and others have been trying to persuade the VA to resume wholehearted data-sharing, but with little success. "We've been trying to solve this for over five years," she said.

Representatives of a "whole cadre of associations" -- including NAACCR, the CDC, the American Cancer Society, and the National Cancer Institute -- met in early August to discuss the issue, Dr. Deapen said.

He said the VA position has two main effects.

The skewing of national and state cancer incidence rates, he said, is "correctable."

What is "incorrectable," he said, is the effect the data blockade could have on research.

...researchers investigating the causes of a particular type of cancer might be misled if they were not aware of a cluster of cases being treated in VA hospitals.

"Once that study is done, (the researcher) doesn't get to go back and do it over," Dr. Deapen said. Research during this period "will forever require an asterisk" to remind other researchers that it might not be correct.

...some cases may slip through the cracks under a related VA policy that forbids interstate data-sharing, he said.

For instance, he said, it's common for veterans in some eastern states to seek treatment in neighboring states.

The host state doesn't count them, because they live next door. And the VA refuses to notify the home state or let the host state do so...

Several of the cancer registries that are being locked out of VA data take part in the Surveillance Epidemiology and End Results (SEER) program, according to Brenda Edwards, Ph.D., of the National Cancer Institute, which operates the database, a valued resource for epidemiological research.

"This will significantly impact reporting in SEER," Dr. Edwards told Lancet Oncology.

The collection of disease incidence data is a state responsibility, Dr. Deapen said, but the VA -- as a federal agency -- is under no obligation to comply with state laws.

Why would anyone want to block this information? Certainly they can protect

privacy while still providing epidemiological data. I just do not understand

this.

Perhaps the Reveres at Effect Measure are correct in their comment that, "finding out who gets cancer, where and when are some of the most important clues to occupational and environmentally caused cancer, not to mention service-related cancer." But, I would not want to think that this could be the real reason for such a hugh witholding of information.

[davb]

hiding important data that might cause political problelms and incriminate certain govt. entities. hmmm. sounds like it starts with a "b" and ends with a "sh"

[HM2VikingRN, RN]

depleted uraniium exposure is one occupational hazard for veterans...