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VA not part of cancer stats
The state wants the data, but the VA wants patients' privacy guaranteed.
By WILLIAM R. LEVESQUE, Times Staff Writer
Published October 13, 2007
Each year as Florida health officials collect data on cancer cases from Key West to Pensacola, one big piece of the picture is missing:
The U.S. Department of Veterans Affairs is refusing to report information on VA cancer patients to health officials in Florida and several other states. Stung by security breaches in its own ranks, the VA says it wants assurances that states can protect patient confidentiality and privacy.
Florida health officials said Friday that the omission is critical in a state with more than 1.7-million veterans -- the second-largest population in the country -- and may prevent researchers from identifying cancer clusters and trends.
It also makes unavailable a large pool of patients who might participate in cancer studies. The data includes patient names and Social Security numbers along with medical information.
"It's a huge impact," said Jill MacKinnon, project director for the Florida Cancer Data System and an instructor at the University of Miami. "It does the veterans of Florida a huge disservice. It masks what perhaps may be very important issues in Florida. We're not really able to see the true cancer picture."
Tara Hylton, a cancer epidemiologist with the Florida Department of Health, said the data "tells researchers the current pulse of cancer in your area."
The VA wants each state to sign a directive assuring that it will follow specific safeguards before the VA will provide the information. For instance, researchers can't get information on VA patients without approval from the VA's undersecretary of health, or through collaboration with someone at the VA.
"We want to assure that the data transfer is safe," said John Pickens, a regional spokesman for the VA. "We're living in an electronic age when information can easily be misused."
MacKinnon said proper security safeguards are already taken.
Since Florida began collecting data statewide in 1981, she said, the state has never suffered a breach of security.
It remains unclear how many states have signed the VA directive. Florida health officials aren't ruling out that they will, too. But first, they want the VA to remove some of the more cumbersome conditions.
"They're not making it easy for the state to comply," said Hylton at the Florida Department of Health, which oversees the reporting program.
One example is a requirement to keep VA patient data separate from non-VA materials.
"What if a VA patient was also treated at another hospital?" Hylton said. "Am I not allowed to consolidate those files?"
The Centers for Disease Control and Prevention estimates that up to 70,000 new cancer cases could be missed nationally each year without VA reporting, according to The Lancet Oncology, a medical journal that first reported that the VA had stopped sharing data with some states.
More than 450,000 veterans are treated annually at VA facilities in Florida. How many of them get cancer is unclear.
Florida health officials said that through the years the VA has reported some numbers from its six hospitals in the state. But the reporting has always been inconsistent and limited to one or two facilities, and then only for a short time.
Under state law, hospitals are mandated to report the cancer information.
When the state has pressed the VA, "they have reminded us they don't fall under state jurisdiction," Hylton said.
Previously, the VA blamed inadequate resources for its failure to provide data, not security concerns, Hylton said.
But since last year, when a VA laptop with personal information on over 26-million veterans was stolen in Maryland, computer security has been a top agency priority.
"The VA has taken a black eye with some of their computer data being stolen," MacKinnon said. "So I can appreciate the fact that they're sensitive to this. But we've been in existence a long time, and we've got a perfect record of protecting patient confidentiality."