Privacy Concerns Prompt VA Hospitals To Withhold Cancer Data

Department of Veterans Affairs officials are citing patient privacy concerns in their decision to stop providing states with information on cancer patients treated at VA hospitals, a move that researchers say could hinder the national cancer surveillance program's ability to accurately collect cancer statistics, the New York Times reports.

Hospitals are required by state laws to submit data, including a cancer patient's name, address, age, race and medical history. The information is then used to compile cancer rates and help researchers track statistics.

VA in August instituted a new national directive that sets conditions for state use of patients' personal data and has said it cannot provide data until states sign the directive.

The directive states that any researcher who wants to use the personal data of VA patients must either get permission from the VA's undersecretary of health or find a VA researcher to collaborate with and get permission from the hospital's ethics board. The directive also requires patient information to be encoded to prevent unauthorized access.

A few states have signed the directive, but most states, including California, have not signed it and say the department's conditions are nearly impossible to meet, the Times reports.


The disagreement over the cancer data began in October 2005 in California, when the state's central cancer registry needed to renew its agreement with VA hospitals in the state. The hospitals began asking questions about what the data were used for and who were using it.

Tina Clarke, an epidemiologist at the Northern California Cancer Center, said researchers have no idea how they will meet the directive. She added that it could take a year or more to get the required permissions from a local ethics board, the cancer registry's board and the VA's board.

Even if states sign the directive and only use data to compile the number of cancer patients, the researchers' work would be limited because they would not have access to patients' identifying information, the Times reports.

Sen. Daniel Akaka (D-Hawaii), chair of the Senate Veterans' Affairs Oversight Committee, said he sympathizes with the VA and said researchers "need to try to see what they can do about working with the system and the process" (Kolata, New York Times, 10/10).

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