Doctors wonder whether Social Security's "Death Master File" is reliable

[Clark]

http://www.vcstar.com/news/2011/jul/30/doctors-wonder-whether-social-securitys-reliable/

Doctors wonder whether Social Security's reliable
By Lee Bowman

Doctors and medical researchers often worry if they can trust the Social Security Administration to accurately tell them when Americans die.

Federal death records have long been used to determine if critically ill patients are still alive as they wait for organ transplants. Researchers also need reliable information for health studies that follow people over many years, even a lifetime, after they've had a particular medical procedure or been identified as having certain traits.

Researchers typically turn to one or both of two databases to determine if someone is dead or alive — the National Death Index, which contains virtually all death certificates filed in the U.S. since 1979, and the Social Security Death Master File, which contains records of nearly 90 million benefit enrollees reported to the government as deceased since 1937.

"Knowing when a subject died gives us some finality," said Dr. Alexander Turchin, a researcher at Harvard Medical School and Partners Healthcare System in Boston. "It's the one invariable. We can argue whether someone had a heart attack or kidney disease, but you can't argue whether someone has died."

Except when the Social Security system occasionally mislabels as dead someone who is still alive.

"Mistakes are a concern, because death is a relatively rare outcome, so if just a few deaths are erroneous, the conclusions of the study may be in error as well," Turchin said.

Turchin and several colleagues published a study online last November that matched electronic medical records against Social Security death reports for nearly 160,000 patients going back to 2000.

Their report, titled "I Am Not Dead Yet: Identification of False-Positive Matches to the Master Death File," found that more than 24,000 of the patients had at least one medical record element, such as new bills, medicine disbursement, lab reports or vital signs, still being recorded a month or more after the patient supposedly died.

Further sifting of the records and other data found there were about 800 patients reported dead through the DMF who were actually alive.

"It's not an enormous number, but the more errors we can take out up front, the better the work will be," Turchin said.

The DMF also is used by the United Network for Organ Sharing — a private, nonprofit organization that manages the U.S. organ transplant system under a contract with the U.S. Department of Health and Human Services.

[Clark]

Some are proposing that this data source be considered sufficient due diligence in living donor followup.  I disagree, not least as my SSN is not in my transplant center's file or my PCP's file.  I guard it closely, and only surrender it to those with legal authority to use it for identification purposes.  Aside from its incompleteness and included errors, it is insufficient followup to rely on a third party report on our deaths alone.  Direct contact with us, our families, and our PCPs about our ongoing condition and wellbeing from the time we self identify to the transplant center as candidates in perpetuity is the minimum standard I campaign for.

[livingdonor101]

And let's not forget that UNOS has no quality control measures in place for their data, so the social security number provided by the transplant center might not correct for the living donor in question.