Challenges and adaptions in longitudinal data linkage to track patient health service use and care pathways after Emergency Department presentation: an exemplar

Abstract

Background The routine collection, production and storage of patient data is increasing globally, however the healthcare industry is failing to maximise its use to audit healthcare delivery and inform policy. Linking data allows researchers to generate new insights while protecting patient privacy. Processes of data management and linking can poses challenges for researchers and there is a need for transparent description of methods and solutions. This paper outlines methods used to produce high quality, linked data describing patient health service use and care pathways after presenting to the Emergency Department (ED) with early pregnancy complications. Methods The retrospective cohort study used 10 years of linked data extracted from a regional health district’s databank. Strict inclusion/exclusion criteria were applied to the core dataset. There were six steps to the method: 1) writing data extraction code, 2) data collection, 3) data processing and refinement. 4) Datasets were prepared for linking, 5) deterministic linkage was used to produce final linked dataset and 6) combined dataset was analysed. Throughout the process of data management and linking a commitment to data sovereignty was upheld. Results Numerous challenges were faced when linking health data. Comprehensive solutions that were both systematic and repeatable were developed. For example, the creation of Clinical Phases of Care, a window of 28-days of care starting at arrival date of initial ED presentation. Clinical Phases of Care increased opportunity for higher linking yield, and mitigated issues with missing data and absence of linking terms. Challenges with handling big data, multiple supplies, and data variables not available or incorrectly formatted, were resolved by using statistical software. Conclusions Using an exemplar, methods of data management and linking have been shared, a process that could be directly transferred to other ED presentations. Key lessons for data linking strategies have been shared, providing clinical practitioners, researchers, decision makers and managers with a ‘how to guide’ on data management and linkage to audit and inform best practice and health policy.