Summer School GENESIS-DH: Innovative solutions to the gender data gap in clinical research

The GENESIS-DH Summer School (Gender Equity in Clinical Studies through Innovations and Solutions in Digital Health) brought together 18 participants from nursing, psychology, computer science, medicine, ethics and related disciplines at Witten/Herdecke University (UW/H) from 16 to 18 September. The focus was on the question of how digital technologies can be used to reduce the existing gender data gap in clinical research and to understand in which areas the gender data gap is being exacerbated by digital health.

Gender data gap in various clinical pictures

The first two days were mainly characterised by the communication of content on the gender data gap in the historical course, digital health, diversity medicine, participatory research and research data management. After keynote speeches and workshops, the participants worked in teams on the problems of four different diseases in relation to the gender data gap. Finally, they presented their results in a public pitch session. Very different, practical approaches were developed.

• One group worked on the idea of a prototype label for wearables that specifically addresses the needs of pregnant women and visualises and closes the existing gender-specific data gaps in healthcare.
• A second group presented the concept of a mobile education campaign for cardiological screening that specifically targets older women and thus draws attention to previously neglected symptoms.
• The third group developed a digital awareness campaign on autism spectrum disorders and attention deficit hyperactivity disorder, which makes gender-specific differences visible and thus takes girls and young women in particular more into account.
• The fourth group presented a gender-sensitive app-based platform for study designs that actively involves women with ME/CFS in clinical research, giving a voice to a patient group that often remains invisible.

The pitches were evaluated and awarded prizes by a multidisciplinary jury.

Artistic contribution is part of the final presentation

A special highlight was the artistic contribution "Tunnel Bingo" by Julia C. Stamm (Resident Kulturforum Witten), which was created in cooperation with Dr Regine Ehleiter from the Chair of Digital Arts and Cultural Mediation and was part of the public closing event. Interested university members were invited as well as external persons and citizens. For Tunnel Bingo, historical tunnel maps were combined with choreographic movement notations and transformed into an interactive game on the university forecourt. This made it possible to experience the consequences of blurred, incorrect or biased data - an artistic approach to the gender data gap that invited participants to reflect and discuss. The artist's concluding lecture emphasised the complexity of the topic.

"The Summer School impressively demonstrated that interdisciplinary collaboration and creative formats such as a hackathon can move participants from knowledge to action in order to bring about lasting change in research practice," says Junior Professor Dr Theresa Sophie Busse, Junior Professorship of Digital Health. "We also need these high-profile approaches to close blind spots in clinical research and enable fairer healthcare," adds Manuela Malek, GENESIS-DH project team member, Junior Professorship of Digital Health.

In addition to the content-related results, the Summer School was scientifically monitored. A pre/post survey analysed how the participants' knowledge, perspectives and ability to reflect on the topic of the gender data gap and digital health developed. Initial analyses indicate that the participants were significantly sensitised by the interdisciplinary exchange and will look at bias, data gaps and digital inequalities with a sharper eye in future.

The GENESIS-DH Summer School was funded by the Federal Ministry of Research, Technology and Space (BMFTR) (funding reference 01GN2511).