Consideration of sex and gender in routine research data: Results from an online survey across German medical Data Integration Centers

Background: Medical Data Integration Centers (DIZ) have been established at German university hospitals to collect, transfer, consolidate, and process routine clinical data and make it available for health research. Consideration of sex and gender benefits research and enhances the quality of medical care. We therefore argue that DIZ staff members need to be well-informed and knowledgeable about sex and gender aspects in clinical data. Only then they can inform about research quality gain and advise researchers on thoughtful selection of study cohorts, appropriate encoding of sex and gender information, and the benefits of considering gender distributions.Objective: This work systematically analyzes the awareness of sex and gender among technical and scientific staff members at DIZ. The survey will guide future recommendations for handling sex and gender aspects in clinical research. Methods: Using an online survey, we assess how knowledgeable DIZ staff currently are regarding sex, gender and gender scores. The survey was distributed in February 2024 to all 38 DIZ in Germany via a national mailing list. It was structured into three topics: (1) perception of sex and gender in medical research, (2) consideration of sex and gender during data collection, and (3) consideration of sex and gender in data use and reuse. We analyzed the collected data with descriptive statistics and checked for correlation within the dataset.Results: After a four-week response period, 74 current employees had fully completed the questionnaire and an additional 62 had partially completed it. The survey results show a lack of knowledge and awareness regarding sex and gender aspects among DIZ employees indicated by a high amount of ``No" and ``I don't know" answers, specifically regarding sex- and gender-specific training, official recommendations, and team policies.Conclusion: As essential links between clinics and researchers, DIZ employees need targeted training on sex and gender aspects to better support and advise research efforts. We provide first recommendations for the different levels of administration to improve knowledge and awareness of sex and gender aspects in medical research data.