Linking clinical registry data with administrative data using indirect identifiers: Implementation and validation in the congenital heart surgery population

Sara K. Pasquali, Jeffrey P. Jacobs, Gregory J. Shook, Sean M. O'Brien, Matthew Hall, Marshall L Jacobs, Karl F. Welke, J. William Gaynor, Eric D. Peterson, Samir S. Shah, Jennifer S. Li

Research output: Contribution to journalArticle

Abstract

Background: The use of clinical registries and administrative data sets in pediatric cardiovascular research has become increasingly common. However, this approach is limited by relatively few existing datasets, each of which contain limited data, and do not communicate with one another. We describe the implementation and validation of methodology using indirect patient identifiers to link The Society of Thoracic Surgeons Congenital Heart Surgery (STS-CHS) Database to The Pediatric Health Information Systems (PHIS) Database (a pediatric administrative database). Methods: Centers submitting data to STS-CHS and PHIS during 2004 to 2008 were included (n = 30). Both data sets were limited to patients 0 to 18 years old undergoing cardiac surgery. An exact match was defined as an exact match on each of the following: date of birth, date of admission, date of discharge, sex, and center. Likely matches were defined as an exact match for all variables except ±1 day for one of the date variables. Results: Of 45,830 STS-CHS records, 87.4% matched to PHIS using the exact match criteria and 90.3% using the exact or likely match criteria. Validation in a subset of patients revealed that 100% of exact and likely matches were true matches. Conclusions: This analysis demonstrates that indirect identifiers can be used to create high-quality link between a clinical registry and administrative data set in the congenital heart surgery population. This methodology, which can also be applied to other data sets, allows researchers to capitalize on the strengths of both types of data and expands the pool of data available to answer important clinical questions.

Original languageEnglish (US)
Pages (from-to)1099-1104
Number of pages6
JournalAmerican Heart Journal
Volume160
Issue number6
DOIs
StatePublished - Dec 2010
Externally publishedYes

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Thoracic Surgery
Registries
Health Information Systems
Pediatrics
Population
Databases
Thorax
Research Personnel
Datasets
Parturition
Research
Surgeons

ASJC Scopus subject areas

  • Cardiology and Cardiovascular Medicine

Cite this

Linking clinical registry data with administrative data using indirect identifiers : Implementation and validation in the congenital heart surgery population. / Pasquali, Sara K.; Jacobs, Jeffrey P.; Shook, Gregory J.; O'Brien, Sean M.; Hall, Matthew; Jacobs, Marshall L; Welke, Karl F.; Gaynor, J. William; Peterson, Eric D.; Shah, Samir S.; Li, Jennifer S.

In: American Heart Journal, Vol. 160, No. 6, 12.2010, p. 1099-1104.

Research output: Contribution to journalArticle

Pasquali, SK, Jacobs, JP, Shook, GJ, O'Brien, SM, Hall, M, Jacobs, ML, Welke, KF, Gaynor, JW, Peterson, ED, Shah, SS & Li, JS 2010, 'Linking clinical registry data with administrative data using indirect identifiers: Implementation and validation in the congenital heart surgery population', American Heart Journal, vol. 160, no. 6, pp. 1099-1104. https://doi.org/10.1016/j.ahj.2010.08.010
Pasquali, Sara K. ; Jacobs, Jeffrey P. ; Shook, Gregory J. ; O'Brien, Sean M. ; Hall, Matthew ; Jacobs, Marshall L ; Welke, Karl F. ; Gaynor, J. William ; Peterson, Eric D. ; Shah, Samir S. ; Li, Jennifer S. / Linking clinical registry data with administrative data using indirect identifiers : Implementation and validation in the congenital heart surgery population. In: American Heart Journal. 2010 ; Vol. 160, No. 6. pp. 1099-1104.
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