Checklist and guidance on creating codelists for electronic health records research

Abstract

Background Codelists are required to extract meaningful information on characteristics and events from electronic health records (EHRs). EHR research relies on codelists to define study populations and variables, thus, trustworthy codelists are important. Here, we provide a checklist, in the style of commonly used reporting guidelines, to help researchers adhere to best practice in codelist development and sharing. Methods Based on a literature search and a workshop with experienced EHR researchers we created a set of recommendations that are 1. broadly applicable to different datasets, research questions, and methods of codelist creation; 2. easy to follow, implement and document by an individual researcher, and 3. fit within a step-by-step process. We then formatted these recommendations into a checklist. Results We have created a 9-step checklist, comprising 26 items, with accompanying guidance on each step. The checklist advises on which metadata to provide, how to define a clinical concept, how to identify and evaluate existing codelists, how to create new codelists, and how to review, finalise, and publish a created codelist. Conclusions Use of the checklist can reassure researchers that best practice was followed during the development of their codelists, increasing trust in research that relies on these codelists and facilitating wider re-use and adaptation by other researchers.