VA Patient Privacy Directive Limits Cancer Research

Main Category: Cancer / Oncology
Also Included In: IT / Internet / E-mail;  Public Health
Article Date: 11 Oct 2007 - 6:00 PDT

email to a friend   printer friendly   opinions  

The Department of Veterans Affairs, in an effort to protect patient privacy, has issued a directive that states must sign before VA hospitals can provide data on cancer patients treated at the facilities to cancer researchers, the New York Times reports. Many states have laws that require hospitals to provide the data, but VA hospitals do not have to provide the information.

Under the directive, issued on Aug. 22, cancer researchers who seek to use the data -- which include the name, address, age, race and medical history of cancer patients -- must obtain permission from the VA undersecretary of health or collaborate with an agency researcher and obtain permission from the ethics board of the hospital. The directive also requires individuals who seek to use the data to encode the information.

States can sign the directive and use the data under the conditions outlined by VA; sign the directive and use the data only to compile the number of cancer cases to avoid the need to obtain the personal information of patients; or decide not to sign the directive. Few states have signed the directive, and cancer researchers maintain that they cannot meet the conditions outlined by VA.

Comments
Joel Kupersmith, chief of the research and development office at VA, said, "The VA has come down clearly. The paramount issue for us is the protection of patient privacy and the protection of patient information." Raye-Anne Dorn, national coordinator for cancer programs at VA, added that many cancer patients at department hospitals do not want to participate in studies and "wouldn't take kindly to getting a call from researchers."

However, some critics have raised concerns about the effect of the directive on cancer research. Brenda Edwards, associate director of the surveillance research program at the National Cancer Institute, said, "Cancer research will be severely impacted." Christie Eheman, acting chief for the cancer surveillance division at CDC, said that she has met with VA officials to discuss the issue. She added, "I think we've got some hard work to do."

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

Reprinted with kind permission from http://www.kaisernetwork.org. You can view the entire Kaiser Daily Health Policy Report, search the archives, or sign up for email delivery at http://www.kaisernetwork.org/dailyreports/healthpolicy. The Kaiser Daily Health Policy Report is published for kaisernetwork.org, a free service of The Henry J. Kaiser Family Foundation© 2005 Advisory Board Company and Kaiser Family Foundation. All rights reserved.

• Additional
• References
• Citations