gms | German Medical Science

Introduction: Consideration of sex and gender enhances study design, research quality, contributes to social equality, and enhances the quality of medical care [1]. The German Ethics Council defines gender as socially constructed, evolving through biological and psychological factors, along with an individual's social biography and role in society [2]. Recently, German medical Data Integration Centers (DIC) have been established by the Medical Informatics Initiative [3] to collect, transfer, consolidate, and process routine clinical data and make it available for use in health research [4]. We argue that DIC staff members need to be well-informed and knowledgeable about research quality gain in order to advise their clients on thoughtful selection of study cohorts, appropriate encoding of gender information, and the benefits of analyzing datasets regarding gender distributions. Therefore, this work aims to systematically analyze the level of knowledge of technical and scientific staff members at the DIC regarding the encoding of sex and gender in routine research data.

Methods: We developed a survey to assess the level of knowledge about sex and gender in medical research as described above. The survey was structured into three topics: (1) knowledge of gender aspects in medical research, (2) consideration of gender in data collection, and (3) consideration of gender in data use and reuse. It was developed by five domain experts, three with a primary background in medicine, one with a background in medical informatics, and one with a background in medical documentation. The resulting questionnaire [5] contains eight single-choice and three multiple-choice questions with short-answer options.

Results: The survey was distributed via the national mailing list of the 34 DIC. After a four-week response period, 74 current employees had fully completed the questionnaire and an additional 62 had partially completed it. Preliminary analysis suggests that staff members are insufficiently trained regarding gender and gender-related variables. Specifically, when asked whether employees were trained on the relevance of gender or gender variables, see Question 2 [5], the majority of 66,2% reported that they had not received any training (14,9% answered “do not know”, 9,5% “yes”, 9,5% chose not to specify).

Discussion: The survey results indicate a lack of knowledge or awareness of gender among DIC employees. However, a small fraction of sites has already implemented training to increase awareness. Further descriptive analysis will be performed on the established dataset to gain more insight into this matter. Specifically, future research will investigate the reason and background of the knowledge gap, examine gender encoding in primary clinical system and review international efforts for gender encoding in this regard.

Conclusion: DIC are established as central units for access to clinical research data. Therefore, it is crucial to further educate employees about sex, gender and gender scores. Our survey data, collected in the context of the program Excellence through Inclusiveness in Medicine (InkE), funded by the German Federal Ministry of Education and Research (01FP23G10A, 01FP23G10B), can serve as basis for establishing a nationwide program for better gender awareness and a standardized training of researchers in all DIC.

The authors declare that they have no competing interests.

The authors declare that an ethics committee vote is not required.