A study linking patient EHR data to external death data at Stanford Medicine

TL;DR

This study develops and evaluates methods for linking patient EHR data with external death records, revealing challenges in linkage accuracy and the need for multiple data sources for comprehensive death data in research repositories.

Contribution

The paper presents a generalizable framework for linking real-world patient data across organizations and evaluates linkage rules, highlighting their variability and limitations.

Findings

Strong linkages are often incomplete.

Weak linkages tend to be noisy.

Different datasets require different linkage rules.

Abstract

This manuscript explores linking real-world patient data with external death data in the context of research Clinical Data Warehouses (r-CDWs). We specifically present the linking of Electronic Health Records (EHR) data for Stanford Health Care (SHC) patients and data from the Social Security Administration (SSA) Limited Access Death Master File (LADMF) made available by the US Department of Commerce's National Technical Information Service (NTIS). The data analysis framework presented in this manuscript extends prior approaches and is generalizable to linking any two cross-organizational real-world patient data sources. Electronic Health Record (EHR) data and NTIS LADMF are heavily used resources at other medical centers and we expect that the methods and learnings presented here will be valuable to others. Our findings suggest that strong linkages are incomplete and weak linkages are noisy i.e., there is no good linkage rule that provides coverage and accuracy. Furthermore, the best linkage rule for any two datasets is different from the best linkage rule for two other datasets i.e., there is no generalization of linkage rules. Finally, LADMF, a commonly used external death data resource for r-CDWs, has a significant gap in death data making it necessary for r-CDWs to seek out more than one external death data source. We anticipate that presentation of multiple linkages will make it hard to present the linkage outcome to the end user. This manuscript is a resource in support of Stanford Medicine STARR (STAnford medicine Research data Repository) r-CDWs. The data are stored and analyzed as PHI in our HIPAA-compliant data center and are used under research and development (R&D) activities of STARR IRB.