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Applicability of Existing Gender Scores for German Clinical Research Data: Scoping Review and Data Mapping
Lea Schindler1, Hilke Beelich1, Elpiniki Katsari2
1Medical Informatics Laboratory, University Medicine Greifswald, Walther-Rathenau-Straße 48, Greifswald, 17475, Germany, 49 03834 86 ext 8370.
Standardizing gender data collection in German hospitals is crucial for accurate health research. This study proposes expanding the Medical Informatics Initiative core dataset to include essential gender-related variables for better analysis.
Area of Science:
- Health Informatics
- Medical Research
- Gender Studies
Background:
- Sex and gender considerations enhance research quality and equity.
- Challenges persist in accurately representing dynamic gender in medicine.
- Current methods for gender data collection are insufficient for clinical research.
Purpose of the Study:
- To establish a standard for collecting and assessing gender-specific data in German university hospitals.
- To evaluate existing gender scores for applicability in clinical research.
- To propose actionable steps for integrating gender data into routine clinical practice.
Main Methods:
- Systematic review of 22 publications on gender scores.
- Assessment of gender score applicability on German clinical data (Medical Informatics Initiative core dataset - MII CDS).
- Evaluation of MII CDS for existing gender-relevant variables.
Main Results:
- No standardized, validated gender score exists for health research.
- Existing gender scores are primarily for epidemiological research and not easily applicable to clinical data.
- The MII CDS lacks crucial variables needed for comprehensive gender scoring, though some data exists in routine clinical practice.
Conclusions:
- Updating and expanding the MII CDS with gender-relevant information is necessary for retrospective analysis of clinical data.
- Recommendations and concrete steps are provided for capturing and representing gender data in a machine-readable format.
- Implementation of these changes will improve gender-specific health research capabilities.
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