Restricted Access To Death Records Hinders Essential Health Studies

In an effort to curb identity theft and preserve private information, the Social Security Administration (SSA) instituted new rules to limit access to death records in November, interpreting a 1983 law to mean that the Administration cannot divulge certain state records to the public. But the changes have made it significantly more difficult for public health officials to update their data on research topics ranging from transplant availability rates to cancer prevention research.

According to the New York Times, the new policy hampers the researchers who need to access public health data and don’t have many good alternatives — such as the federal agency that determines whether or not certain transplant programs are effective enough to merit federal funding, which is no longer receiving its data on time due to the added burden of verifying a patient’s death:

“It’s very critical that we have an objective way to measure deaths,” Dr. Schold said. “Otherwise we’re getting the data from the centers we’re measuring, and that’s problematic” because they cannot track all former patients until death.

Gary Chase, the senior project manager of the Nurses’ Health Study, a 36-year Harvard examination of cancer prevalence among more than 200,000 women, said the new policy had “thrown us back to the pre-Internet era, where you’d start looking in the phone book for someone with a similar name and sending out a bunch of letters.”

Greta Lee Splansky, the director of operations for the Framingham Heart Study, which is based at Boston University, said the withheld records meant “the loss of a very valuable tool.”

Over six decades, the study has examined the causes and effects of heart disease in three generations of subjects who were originally from the same town in Massachusetts. Many are dying off. “It just slows us down,” Ms. Splansky said. “It’s wasting research dollars.”

The SSA, however, says that its officials’ hands are tied. Mark Hinkle, a spokesperson for the SSA, told the New York Times that researchers will have to collect data from the states while the SSA follows the law to the best of its program’s ability. The conflict demonstrates that even in an era of electronic records, information-sharing policy has not quite caught up with massive technological advances.

“We are not going to be on time until this problem is corrected,” said Dr. Bertram L. Kasiske, a Minneapolis nephrologist who directs the Scientific Registry of Transplant Recipients research group. “It’s a big deal. A lot of people look for these reports and depend on them.”