Changes in policy affect the Death Master
The “Death Master” is not the Grim Reaper or some obscure vampire film. It is a file maintained by the Social Security Administration (SSA) with information on millions of deceased persons and their social security numbers. It is updated weekly and available for subscription. Government agencies, financial entities and credit organizations use the information to prevent fraud and deception.
The file is very useful for healthcare research. Changes implemented Nov. 1, 2011 have limited its use. The SSA made these changes due to the Freedom of Information Act (FOIA), which no longer allows them to disclose “protected state records.” An estimated 4 million entries have been removed from the file due to privacy concerns. Data releases since that dramatic change are an estimated 1 million records less than the 2.8 million collected and made public. Perhaps more remarkable was the SSA made yet another change in policy that indicates it will keep secret errors in the Death Master File (DMF).
Clear as mud? There are errors in the DMF that list people who are actually living. Yes, we have the “walking dead” among us. An estimated 10,000-14,000 people a year are mistakenly reported dead because of data entry errors. This has serious implications for the “walking dead,” leaving them susceptible to loss of pension, insurance, credit and employment.
Let’s consider these “secret errors.” Previously, when errors were discovered, updates were made available with each release. Now, if the update pertains to what is now considered protected data, it will not be made available. The SSA will correct their internal version of the file, but not the public file. Keeping identities of living persons within the DMF secret will ensure adverse consequences.
These changes can have a large impact on data users for research and fraud detection. The Dallas-Fort Worth Hospital Council Foundation (DFWHC Foundation) is implementing the Death Master File into its Regional Enterprise Master Patient Index (REMPI) to assist hospitals tracking former patients for healthcare studies.
Hospitals, Oncology programs, public health organizations and medical researchers use the DMF to track patients for studies. The recent SSA restriction in accessing death records could have a serious impact on these studies. Many population health studies compare death results to reveal important findings that inform the community. Researchers engaged in cancer prevention or transplant studies have consulted the DMF. The American Cancer Society has published hundreds of studies based on DMF records. If researchers know if someone has died, it provides a crucial puzzle piece when evaluating quality of care, procedures or intervention risks.
Medical researchers are used to working with sensitive data. There are severe rules and regulations dictating its use. The recent change in policy limiting the data could impact public health benefits. The SSA should reassess withholding this information. It would be helpful for researchers with proper accreditations and Institutional Review Board approvals to have access to the full database—including the corrections. As a commitment to data integrity, the DFWHC Foundation’s Information and Quality Services Center will continue to examine ways it can supplement the DMF to provide accurate reporting.