Calls New American Cancer Society Report Further Evidence of Need for Better Data Collection

Congressman Brian Higgins (NY-27) pointed to an American Cancer Society report on rising U.S. cancer deaths as further evidence of the need to support the data collection efforts of the American Cancer Society, Centers for Disease Control, the National Cancer Institute, the North American Association of Central Cancer Registries, state health departments, and others in their continual quest to improve the quality of cancer research and care.  The Congressman recently called on the Department of Veterans Affairs to allow the cancer community fair and adequate access to cancer data from patients of veterans hospitals.  Such information is crucial to our country’s continued fight against cancer.  

“The information released this week by the American Cancer Society regarding U.S. cancer deaths is extremely valuable in helping federal and state governments determine where resources should be allocated to fight cancer. It is crucial that the cancer community have access to this data so that their reports are as accurate as possible.” Higgins said.

After learning that an August 2007 Department of Veterans Affairs directive severely restricted the ability of the cancer community to collect cancer data from veterans hospitals, Congressman Higgins became concerned about the negative impact this data being withheld would have on cancer research. Under state law, hospitals are required to submit the incidence of cancer among their patient population.  However, no such requirement exists for Veterans Affairs hospitals.  The Congressman contacted Veterans Affairs Secretary James Peake asking that the VA find a way for this crucial data needed by the cancer community be released as soon as possible.

“I understand the issue of maintaining the privacy of your patient’s medical conditions.” Congressman Higgins said in a February 8, 2008 letter to Secretary of Veterans Affairs James Peake. “My concern about your directive lies in the potential negative impact it may have on the collection of cancer data by state health departments.” 

“Having accurate data about the incidence of cancer and cancer deaths nationwide is critical to our efforts to fight the disease,” said Daniel E. Smith, President of the American Cancer Society – Cancer Action Network (ACS-CAN), the advocacy arm of the American Cancer Society. “We commend Rep. Higgins’ efforts to persuade the VA to share this important data, which can be provided in the aggregate to protect the privacy of individual patients and their families.”

            The full text of Congressman Higgins’ letter is below:

February 8, 2008

The Honorable James B. Peake

Secretary of Veterans Affairs

810 Vermont Ave, NW

Washington, DC 20420

Dear Secretary Peake,

I am concerned by the potential impact of an August 15, 2007 directive issued by the Department of Veterans Affairs restricting the collection of information detailing the number of patients with cancer at your facilities across the country. 

I understand the importance of maintaining the privacy of your patients’ medical conditions.  Congress has been addressing the issue of patient privacy for quite some time, and the integration of technology into the storing of medical records will surely keep privacy on the agenda.

My concern about your directive lies in the potential negative impact it may have on the collection of cancer data by state health departments.  This data holds great importance to our nation’s cancer community.  State health departments, the National Cancer Institute, and countless advocacy groups rely heavily on this data to determine where resources should be allocated to fight cancer at all levels.  Incomplete data sets could hinder their efforts, underestimating the incidence of cancer across the country.

As you further consider this directive, I implore you to contemplate the crucial role data collection plays in our nation’s efforts to fight cancer.  I am aware that, unlike all other hospitals, VA facilities are not required by law to disclose data detailing cancer statistics among patients.  However, I hope a solution is made shortly so that this data could be released to the cancer community in a way that is not overly burdensome on the ability of well-credentialed and esteemed researchers to use it properly.

I would appreciate a follow-up response to this inquiry as soon as possible. The seminal document on cancer incidence in the United States, Cancer Facts and Figures: 2008, published by the American Cancer Society, should be released shortly.  I hope that the VA can be a positive partner in the data collected for that document, both now and into the future.

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