Administrative health databases for addressing emerging issues in adults with CHD: a systematic review

Abstract

The need for population-based studies of adults with CHD has motivated the growing use of secondary analyses of administrative health data in a variety of jurisdictions worldwide. We aimed at systematically reviewing all studies using administrative health data sources for adult CHD research from 2006 to 2016. Using PubMed and Embase (1 January, 2006 to 1 January, 2016), we identified 2217 abstracts, from which 59 studies were included in this review. These comprised 12 different data sources from six countries. Of these, 55% originated in the United States of America, 28% in Canada, and 17% in Europe and Asia. No study was published before 2007, after which the number of publications grew exponentially. In all, 41% of the studies were cross-sectional and 25% were retrospective cohort studies with a wide variation in the availability of patient-level compared with hospitalisation-level episodes of care; 58% of studies from eight different data sources linked administrative data at a patient level; and 37% of studies reported validation procedures. Assessing resource utilisation and temporal trends of relevant epidemiological and outcome end points were the most reported objectives. The median impact factor of publication journals was 4.04, with an interquartile range of 3.15, 7.44. Although not designed for research purposes, administrative health databases have become powerful data sources for studying adult CHD populations because of their large sample sizes, comprehensive records, and long observation periods, providing a useful tool to further develop quality of care improvement programmes. Data linkage with electronic records will become important in obtaining more granular life-long adult CHD data. The health services nature of the data optimises the impact on policy and public health.

Risk of serious infection among patients receiving biologics for chronic inflammatory diseases: Usefulness of administrative data

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“…Secondary data sources correspond to a rich source of information that have become extensively used over the recent years 345,346 . This SLR highlights the main characteristics of the 123 databases used for secondary research in Colombia identified in 323 articles.…”

The Future of Adult Congenital Heart Disease Research: Precision Health Services Delivery for the Next Decade

“…Although networks typically involve primary data collection, registries or databases may collect primary medical or surgical data or may apply secondary analyses to existing data sources. 81,82 Other data collection platforms assemble referral centres to voluntarily share data to address specific research queries. Tools that merge patient management tasks, clinical data, and reporting functions have been launched and developed in Canada and elsewhere.…”

“…22,25 Since the publication of the first paper from the Qu ebec CHD database, there has been a steady increase in secondary analyses of similar data sources in Canada, 95 the US, and Europe. 82 International efforts are ongoing to identify innovative data sources. In the absence of unique identifiers made possible with universal health insurance, US data sources such as the National Inpatient Sample use episodes of care rather than patients as units of measurement.…”

“…96 Internationally, data sources in Belgium, Denmark, Sweden, and Spain have been increasingly used to analyze ACHD data directly. 82 Widely varying CHD nomenclature systems, which impair the ability to compare like with like, have been addressed in a variety of important ways with the International Nomenclature Project and the development of International Pediatric and Congenital Cardiac Codes informed by surgical anatomy and more recently with the mapping of the International Classification of Disease (ICD) to its 10th version, enabling highly specific CHD diagnoses to improve the quality of research in Canada. 97 These efforts have also been used to inform electronic health record data standards for CHD to attempt more uniform coding and data collection procedures.…”