Social Security record limits hinder research

Agency's restriction to its death list was spurred by concern over identity theft

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A Social Security Administration shift last year to limit access to its death records amid identity-theft concerns is beginning to hamper a broad swath of research, including federal government assessments of hospital safety and financial industry efforts to spot consumer fraud.

For example, a research group that produces reports on organ-transplant survival rates is facing delays because of extra work required to determine whether patients are still alive. The federal agency that runs Medicare uses the data to determine whether some transplant programs have such poor track records that they should be cut off from government financing.

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

Other medical researchers, including those conducting long-term federally financed studies of cancer and cardiovascular treatments, said the changes imposed last November were now slowing their work significantly. And a spokesman for financial industries such as life insurance, banking and credit services said the arcane change was making it more difficult to detect identity thieves who steal names and Social Security numbers from the deceased. "There is already a consequence -- there has to be -- because there are fewer records available," said Stuart Pratt, president of the Consumer Data Industry Association.

The Social Security Death Master File is an index of 90 million deaths that have been reported to the agency over 75 years by survivors, hospitals, funeral homes and state offices. The listings include names, Social Security numbers and dates of death.

The agency did not make the information public until 1980, after a legal ruling required that the data be disclosed. The list is updated weekly and, while it is neither comprehensive nor 100 percent accurate, it is considered the most current record of deaths nationwide, making it a rich trove for researchers.

It is also far more affordable than the leading option -- a death index kept by the U.S. Centers for Disease Control and Prevention, or CDC, that, while more complete, is typically 14 to 18 months out of date.

For a decade, the Social Security master file routinely included records provided by the states. But last year, after reports that the widespread availability of death records was facilitating identity theft, the Social Security Administration determined that it had been improperly releasing the state records as part of the public master file.

Under a 1983 law, the agency concluded, those state records -- but only those records -- were exempted from public disclosure. However, they could be made available to other federal agencies that needed them to determine whether to pay or discontinue benefits, such as the Internal Revenue Service and the Centers for Medicare and Medicaid Services.

As a result, 4 million deaths were expunged from the publicly available master file last November. Social Security officials expect the number of deaths disclosed each year -- 2.8 million in 2010 -- to decrease by 1 million.

For epidemiologists, it can be critical to learn quickly when the subject of a study has died, so details can be gathered while memories and records are fresh. Without an updated national index, it can be difficult to track those who have moved repeatedly or perhaps died alone.

Cleveland Clinic health researcher Jesse D. Schold said the holes in the master file, which will only grow larger, had already compromised his investigation into mortality rates among living kidney donors. Confirming deaths of subjects by surveying every state would be prohibitively burdensome, he said. And using the index compiled by CDC, which pays states to submit refined data, would be unaffordable, costing perhaps $30,000 to $50,000 a year. An annual Social Security file subscription, with unlimited searches, can be bought for as little as $995. Genealogy websites make the data available online at little or no cost.

Gary Chase, 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, director of operations for the Boston University-based Framingham Heart Study, 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 originally from the same Massachusetts town. Many are dying off. "It just slows us down," she said. "It's wasting research dollars."

Social Security Administration spokesman Mark Hinkle said researchers would simply have to collect data from states. "I don't want to sound offensive," he said. "But our job is to administer the Social Security program, and administering a death list really isn't in our core set of workloads. The bottom line is that we have to follow the laws and administer the programs we're supposed to administer."

In response to panicked medical researchers' pressure, the CDC hopes soon to start updating its death index more quickly, but it will not be able to reduce the cost, said Charles J. Rothwell, the CDC's director of vital statistics. Federal agencies with a stake in medical research have been lobbying Social Security officials to consider a compromise.

In Congress, concern about identity theft, driven by tax fraud cases involving deceased children, has prompted proposals to restrict access even further.

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