In Wednesday's New York Times, Gina Kolata reports on the Veteran Administration's new national directive which requires states to agree to conditions prior to acquiring cancer patients’ personal information and health records. State laws often require hospitals to submit data, but these laws do not apply to federal agencies like the VA. This policy will result in less reliable statistics on the prevalence of cancer and will also chill the progress of state administered cancer research. On the other hand, the protection of patient privacy will be enhanced. The VA'S chief of research and development office, Dr. Joel Kupersmith, noted a "dynamic tension between patient privacy and the desire to use patients’ private information to do research", but stressed that the "paramount issue for us is the protection of patient privacy and the protection of patient information."
The impact of these new restrictions on predictive health cancer research will be especially felt in 17 regions that are part of the National Cancer Institute’s network. According to Kolata, these regions use personal health records provided by hospitals to investigate "cancer risk factors and outcomes" and to "provide data to academic researchers who are doing studies and need to interview patients or need genetic information."While a few states have agreed to sign the directive, many others are holding out--most notably, the state California. States complain that the directives place too many restrictions on the use of the data and that complying with these conditions is both expensive and impractical. Tina Clarke, an epidemiologist at the Northern California Cancer Center estimates that the directive will add over a year to the ethics review process. Clarke added, "Privacy concerns are serious … [b]ut at the same time, this is a baby with the bath water problem." -- J.O.
1. In the next few weeks, as the public begins to digest this news, many cancer patients will be surprised to discover that their medical records and personal information are available for research. Will this story reduce public support and willingness to participate in predictive health research?
2. As Kolata reports, the VA'S chief of research and development, noted that "the department was especially sensitive to privacy concerns in light of incidents like the theft by teenagers last year of a laptop computer containing personal information on 26.5 million veterans." The new directive does not, of course, provide information and privacy protections that would have prevented the theft of a laptop. Will the VA's new policy truly provide the information security and privacy protections that patients expect?
VHA DIRECTIVE 2007-023 (pdf) - RELEASE OF VA DATA TO STATE CENTRAL CANCER REGISTRIES. 15 August 2007. Department of Veterans Affairs -Veterans Health Administration.