Challenges in administrative data linkage for research

Abstract

Linkage of population-based administrative data is a valuable tool for combining detailed individual-level information from different sources for research. While not a substitute for classical studies based on primary data collection, analyses of linked administrative data can answer questions that require large sample sizes or detailed data on hard-to-reach populations, and generate evidence with a high level of external validity and applicability for policy making. There are unique challenges in the appropriate research use of linked administrative data, for example with respect to bias from linkage errors where records cannot be linked or are linked together incorrectly. For confidentiality and other reasons, the separation of data linkage processes and analysis of linked data is generally regarded as best practice. However, the ‘black box’ of data linkage can make it difficult for researchers to judge the reliability of the resulting linked data for their required purposes. This article aims to provide an overview of challenges in linking administrative data for research. We aim to increase understanding of the implications of (i) the data linkage environment and privacy preservation; (ii) the linkage process itself (including data preparation, and deterministic and probabilistic linkage methods) and (iii) linkage quality and potential bias in linked data. We draw on examples from a number of countries to illustrate a range of approaches for data linkage in different contexts.

Health data linkage research in Australia remains challenging

“…Therefore, complete population cover can only be achieved through linkage between jurisdictions. This contrasts with the UK and New Zealand where ownership of national data often belongs to a single provider …”

Comparison of the Victorian Emergency Minimum Dataset to medical records for emergency presentations for acute cardiovascular conditions and unspecified chest pain

“…Such datasets are useful for assessing variations in healthcare, and are being increasingly used for health services research . The advantages of using such data include availability, reduced data collection costs and their longitudinal and multicentre nature . However, a major limitation of administrative datasets is data quality …”

“…2 The advantages of using such data include availability, reduced data collection costs and their longitudinal and multicentre nature. [2][3][4] However, a major limitation of administrative datasets is data quality. 4 The Victorian Emergency Minimum Dataset (VEMD) is a statewide emergency dataset collected for all presentations to public ED and maintained by the Victorian government's Department of Health and Human Services.…”

“…[2][3][4] However, a major limitation of administrative datasets is data quality. 4 The Victorian Emergency Minimum Dataset (VEMD) is a statewide emergency dataset collected for all presentations to public ED and maintained by the Victorian government's Department of Health and Human Services. Currently, VEMD data, which is collected by ED staff (including clerical and health professionals), includes demographic (e.g.…”

Leveraging Administrative Data to Better Serve Children and Families

“…These challenges include gaining and maintaining access to administrative records, ensuring data security and the reliability of matching procedures, and negotiating complex legal protections governing individual health and education records (Culhane et al. ; Gomatam et al ; Harron et al ; Murphey and Braner ; Saunders and Heflinger ). In addition, the sheer magnitude of integrated data and the highly sensitive personally identifiable information contained in it typically preclude researchers from freely sharing data sets with one another for replication and validation purposes (Crosas et al ).…”