Dearth of Death: A Fatal Wound to Medical Research?

My esteemed colleague L.J. Wei often reminds us that health outcomes which are not as hard-edged as death can be misleading. For example, the early press, decades ago, about the uncovering of early cancer by the Prostate Specific Antigen (PSA) was used to justify the surgical removal of hundreds of thousands of prostates. In hindsight, neither the PSA test nor much of the ensuing expensive and occasionally morbid surgeries made a significant dent in lifespan.

One might therefore reasonably conclude that the government, the census bureau, Social Security Administration or the Department of Health and Human Services would therefore place the highest premium on the accurate reporting of death, and its causes, for our citizens. Surely, those data are the incontrovertible evidentiary base for our public health monitoring, medical treatment evaluations (whether of drug, device or procedure), and projections of the fundamental demographics of our nation. So, it might be all too easy for most of us to overlook or dismiss the following innocuous-appearing bureaucratese-laden announcement

IMPORTANT NOTICE The National Technical Information Service (NTIS) has been notified by the Social Security Administration (SSA) of an upcoming important change in the Death Master File data. NTIS, a cost-recovery government agency, disseminates the DMF data on behalf of SSA. Please see the attachment, provided by SSA, for an explanation of the change. The implementation date of this change is November 1, 2011. Should you have any questions, please email me at wstrickland@ntis.gov and I will be happy to forward any questions not answered by the attachment to the Social Security Administration for reply.

What does this mean? It means that there is no longer a single, federal authoritative source of death records. Most of the operational details have now devolved to individual states without guarantees of consistency of reporting or a one-stop-shop for researchers looking for the national distribution of the Grim Reaper. Will we have to resort to crowd-sourcing death now in order to perform accurate population research?

Hat tip: Shawn Murphy

Death workflow

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