Veterans Department Restricts Access to Cancer Info
Growing concerns about patient privacy rights have led the U.S. Department of Veterans Affairs (VA) to tighten controls on cancer data collected at their hospitals. While privacy advocates are applauding the move, leaders in the scientific community are worried about the impact the new measures will have on cancer research.
Until recently, VA hospitals voluntarily participated in cancer surveillance programs mandated by state laws. The data collected at state registries was compiled for use by state institutions and forwarded to become part of a national registry used to track detailed statistics on the disease.
Now, for the first time, the VA has stopped providing the data to states whose officials fail to sign a new national directive setting conditions for using patients’ personal information.
The information collected by hospitals includes the patient’s identity, age, race, type of cancer, recurrence records, and other pertinent facts related to the cancer diagnosis. The national statistics generated from the data are used by researchers to investigate survival rates for different forms of cancer, treatment effectiveness, disease clusters and the role socioeconomic status plays in cancer mortality.
California and other states with large veteran populations have refused to sign the directive because they consider the VA’s conditions virtually impossible to meet. Despite the states’ protests, the VA (which is still feeling the sting of recent security breaches pertaining to patient information) is holding firm on its stance to withhold data from states who don’t comply with the new directive.
Until the matter can be resolved, cancer statistics used and reported by agencies such as the National Cancer Institute and the Centers for Disease Control and Prevention will contain some substantial inaccuracies. Since there’s no known method for correcting the skew caused by the missing data, scientists will have no way to interpret whether a decline in certain cancers was caused by better screening and therapies or simply because the registry didn’t get information on all the cases.
Researchers are already voicing their concerns about the usefulness of data which doesn’t include large populations of veterans. As officials with different vantage points on the situation explained,
“Cancer research will be severely impacted.”
Dr Brenda K Edwards
Associate Director, Surveillance Research Program
National Cancer Institute
“The paramount issue for us is the protection of patient privacy and the protection of patient information.”
Dr Joel Kupersmith
Chief, Office of Research and Development
Veterans Health Administration
Source: The New York Times
Related Links: United Press International; California Healthline.org; The North American Association of Central Cancer Registries
Related Podcast – Healthcare or Hypocrisy: A Look at Patient Privacy from Justice Talking on NPR
Tags: epidemiology; HIPAA; identity theft; California Cancer Registry
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