Commercial obituary record agencies such as ObituaryData. The Centers for Disease Control National Death Index NDI is a centralized database of death records that can be used for research studies, but not for administrative tasks. Requests are expensive, must be submitted via mail on a compact disk, and have a long turnaround time. Other US death data sources are restricted to subpopulations.
The Centers for Medicare and Medicaid Services CMS includes vital status in data extracts, but these extracts cannot be used to query for a specific patient. In contrast to the DMF, local state databases likely remain a reliable source of death data. There is often also a significant lag time for release of death date. An interesting finding in our study was that the number of available SSNs in our dataset declined by about 15 percent between the two periods. The Social Security Number has become a fixture of American life since the first cards were issued in The near universality of the number among Americans adults has led the SSN to become a de facto national identification number.
However, concern over the SSN's use in varied contexts and the rise of identity theft have created a strong push at governmental and commercial levels to eliminate the use of SSNs as identifiers. The current Medicare identifier is based on the patient's SSN and will be replaced with a new identifier starting in April Our analysis was limited to data from a single tertiary care center, and the majority of the patients were residents of a single state New York.
It is possible that other states might have more permissive death data use agreements with the SSA and that DMF data would be more reliable for those states. This is unlikely given that the changes made to the DMF were done at the federal level. We are unable to speculate on the source of this decline since we did not examine cause of death or severity of illness. While this will no doubt increase the coverage of the DMF, the full impact of the addition of these records remains to be seen. The utility of the DMF as a reliable source of death data has declined significantly as a result of the changes made by the SSA in November Although there is now an effort underway to increase the coverage of the DMF, researchers relying on the DMF will significantly underestimate mortality in outcome and population studies.
The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The remaining authors acknowledge that they received no financial or material support for this project.
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Any queries other than missing content should be directed to the corresponding author for the article. Volume 54 , Issue 1. The full text of this article hosted at iucr. If you do not receive an email within 10 minutes, your email address may not be registered, and you may need to create a new Wiley Online Library account. If the address matches an existing account you will receive an email with instructions to retrieve your username.
Health Services Research. Patrick J. Natalia N. Tools Request permission Export citation Add to favorites Track citation. Share Give access Share full text access. Share full text access. Please review our Terms and Conditions of Use and check box below to share full-text version of article. Study Design Retrospective study. Conclusions The DMF is no longer a reliable source of death data. Figure 1 Open in figure viewer PowerPoint. OOH death defined as NY resident who was treated at our institution, died in NY, but did not die in our institution, through December 31, Figure 2 Open in figure viewer PowerPoint.
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Close Figure Viewer. Browse All Figures Return to Figure. Previous Figure Next Figure. Email or Customer ID. Forgot password? They could, however, be made available to other federal agencies, like the Internal Revenue Service and the Centers for Medicare and Medicaid Services, that needed them to determine whether to pay or discontinue benefits. As a result, four million deaths were expunged from the publicly available master file last November.
Social Security officials expect the number of deaths disclosed each year — 2. For epidemiologists, it can be critical to learn quickly when the subject of a study has died so that 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.
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Jesse D. Schold, a health researcher at the Cleveland Clinic , 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 the C. Genealogy Web sites make the data available on the Internet at little or no cost. Schold said. View all New York Times newsletters. 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. Splansky said.
Search the Social Security Death Index
Mark Hinkle, a spokesman for the Social Security Administration, said researchers would simply have to collect the data from the states. In response to pressure from panicked medical researchers, the C. Rothwell, the director of vital statistics. Federal agencies with a stake in medical research have been lobbying Social Security officials to consider a compromise. In Congress, concerns about identity theft — some driven by tax fraud cases involving deceased children — have prompted proposals to restrict access even further. Representative Sam Johnson, Republican of Texas , has introduced legislation to end the public disclosure of the master file altogether.
Senator Bill Nelson , Democrat of Florida , has proposed a bill that would keep death records private until three years after a person died.