Surgical patient registries: scoping study of challenges and solutions.

Abstract

Patient surgical registries are essential tools for public health specialists, creating research opportunities through linkage of registry data with healthcare outcomes. However, little is known regarding data error sources in the management of surgical registries. In June 2022, we undertook a scoping study of the empirical literature including publications selected from the PUBMED and EMBASE databases. We selected 48 studies focussing on shared experiences centred around developing surgical patient registries. We identified seven types of data specific challenges, grouped in three categories- data capture, data analysis and result dissemination. Most studies underlined the risk for a high volume of missing data, non-uniform geographic representation, inclusion biases, inappropriate coding, as well as variations in analysis reporting and limitations related to the statistical analysis. Finally, to expand data usability, we discussed cost-effective ways of addressing these limitations, by citing aspects from the protocols followed by established exemplary registries.