Changes in Access to Death Data May Impede Medical Research

An important source of death records, which are used for epidemiological and longitudinal outcomes studies, may no longer be available to researchers. (Andreas Reh/iStockphoto.com)

Certain types of biomedical research will be compromised by a change by the US Social Security Administration (SSA) in its policies regarding public release of death records, said Eugene H. Blackstone, MD, director of clinical investigations in the department of thoracic and cardiovascular surgery at the Cleveland Clinic.

Blackstone said the SSA’s Death Master File has been a fairly accurate and inexpensive source of data about all deaths in the United States, used by many researchers for epidemiological and long-term outcomes studies. The changes to the Death Master File will make it useless to researchers, but few are aware of this impending problem, he said.

“There is a general lack of awareness in the biomedical research community of this imminent change,” Blackstone said. “For those of us who depend on this for our research, we need to know that it will disappear.”

The problem: beginning on November 1, the SSA will no longer make public the death records that it receives from the states. This means that 4.2 million death records of the 89 million archived by the SSA will be immediately withdrawn from public use. Going forward, an expected 1 million of approximately 2.8 million death records compiled by the SSA each year will be kept from public eyes.

When informed of the changes coming to the Death Master File, Harlan M. Krumholz, MD, professor of medicine at Yale University School of Medicine in New Haven, Conn, said in an e-mail, “Wow—this would be a very unfortunate policy change that would severely limit the ability of many studies to track longitudinal outcomes (mortality).”

David M. Herrington, MD, a professor of medicine in cardiology at Wake Forest Baptist Medical Center in Winston-Salem, NC, said the change will be a major blow to clinical and population research. “We use this source of information as a critical component in many of our population research studies.”

Blackstone said researchers may have to turn to the Centers for Disease Control and Prevention’s National Death Index, which has similar data. But the National Death Index is an expensive resource that tends to be accompanied by red tape, he warned.



Categories: Public Health, Statistics and Research Methods