Applicability of Existing Gender Scores for German Clinical Research Data: Scoping Review and Data Mapping

Background: Considering sex and gender improves research quality, innovation, and social equity, while ignoring them leads to inaccuracies and inefficiency in study results. Despite increasing attention on sex- and gender-sensitive medicine, challenges remain with accurately representing gender due to its dynamic and context-specific nature. Objective: This work aims to contribute to the implementation of a standard for collecting and assessing gender-specific data in German university hospitals and associated research facilities. Methods: We carried out a review to identify and categorize state-of-the-art gender scores. We systematically assessed 22 publications regarding the applicability and practicability of their proposed gender scores. Specifically, we evaluated the use of these gender scores on German research data from routine clinical practice, using the Medical Informatics Initiative core dataset (MII CDS). Results: Different methods for assessing gender have been proposed, but no standardized and validated gender score is available for health research. Most gender scores target epidemiological or public health research where questions about social aspects and life habits are already part of the questionnaires. However, it is challenging to apply concepts for gender scoring on clinical data. The MII CDS, for example, lacks all variables currently being recorded in gender scores. Although some of the required variables are indeed present in routine clinical data, they need to become part of the MII CDS. Conclusions: To enable gender-specific retrospective analysis of routine clinical data, we recommend updating and expanding the MII CDS by including more gender-relevant information. For this purpose, we provide concrete action steps on how gender-related variables can be captured in routine clinical practice and represented in a machine-readable way.