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Empowering a database with national long-term data about mortality: the use of national death registries

Part of: The International Society for Nomenclature of Paediatric and Congenital Heart Disease (ISNPCHD)

Published online by Cambridge University Press:  01 December 2008

David L.S. Morales ,
Andrew J. McClellan  and
Jeffrey P. Jacobs
David L.S. Morales*
Affiliation:
Division of Congenital Heart Surgery, Michael E. DeBakey Department of Surgery, Baylor College of Medicine, Houston, Texas and Division of Congenital Heart Surgery, Texas Children’s Hospital, Houston, Texas, United States of America
Andrew J. McClellan
Affiliation:
Baylor College of Medicine, Houston, Texas, United States of America
Jeffrey P. Jacobs
Affiliation:
The Congenital Heart Institute of Florida (CHIF), Division of Thoracic and Cardiovascular Surgery, All Children’s Hospital and Children’s Hospital of Tampa, University of South Florida College of Medicine, Cardiac Surgical Associates (CSA), Saint Petersburg and Tampa, Florida, United States of America
*
Correspondence to: David L. S. Morales MD, Division of Congenital Heart Surgery, Texas Children’s Hospital, 6621 Fannin St, MC-WT 19345 H, Houston, TX 77030, United States of America. Tel: 832-826-1929; Fax: 832-825-1904; E-mail: dlmorale@texaschildrenshospital.org
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Abstract

The interest of professional medical societies in research about outcomes, mixed with the recent accessibility to management of data on the internet, has moved many societies to create national databases or registries for their specialty. In societies with procedure-based specialties such as surgery, these databases will help with the care of patients by predicting prognosis, defining risk-factors, and aiding with the selection of patients who are the best candidates for these procedures. These databases eventually will also help to establish standards of care. The latter is rapidly growing in importance as governments attempt to create “pay-for-performance” programs in many of the surgical specialties. It is essential to create a database from which a specialty can provide accurate data and standards to its members, its patients, and third parties, such as regulatory bodies and agencies of re-numeration. Unfortunately, surgeons often only care for their patients in the short-term peri-operative period, typically lasting weeks to months; and therefore, the ability of surgeons to create databases with long-term follow-up has been limited. The introduction of “personal health information” into a surgical database, with the intention of linking with other societies or national databases that have long-term follow-up, can remedy this weakness. This article describes the investigation by one surgical society into the available national registries of death and examines their accuracy, accessibility, cost, and their suitability in respect to the goals of that society. The information gathered, the comparisons outlined, and the processes used to determine the best combination of indices of death for this society should be translatable and hopefully useful for other societies and registries who wish to empower their databases with long-term national data about mortality.

Keywords

Congenital heart diseaseNational Death IndexDeath Master Filemortality

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