SHARED-VSC
SHARED-VSC is an interdisciplinary research project that focuses on improving healthcare for individuals with Variations of Sex Characteristics (VSC) and their families in Switzerland.
The project explores their lived experiences, needs, and wishes to better understand the challenges they face in navigating healthcare systems that often lack inclusivity and person-centred approaches.
Drawing on qualitative methods and the DIPEx (Database of Individual Patient Experiences) model, SHARED-VSC aims to co-create tools such as a virtual “living library” and decision aids to support families and professionals. It also includes developing and piloting a training program for healthcare providers to act as navigators and shared decision-making coaches. Ultimately, the project seeks to contribute to a more informed, gender-inclusive, and participatory healthcare system.
Involved Researchers
Core Team:
- Jürg C. Streuli: Main applicant and coordinator (IBME & Institute of Practical Health Ethics / Health Compass Foundation (Stiftung Gesundheitskompass)
- Cynthia Kraus: Co-applicant and coordinator, philosopher of science focusing on the social dimensions of science, technology, medicine, and health. She specializes in interdisciplinary collaboration and bridging science and society.
- Eva De Clercq: Senior researcher in philosophy and biomedical ethics, expertise in palliative care, gender and intersex studies
- Beatrix Göcking: Researcher in biomedical ethics, religious studies and gender studies, member of DIPEx Switzerland, critical care nurse specialist
- Dirkje Swennen: PhD student (healthcare policy and biomedical ethics)
Further Collaborators and Facilitators:
- Nikola Biller-Andorno: Senior advisor, Director DIPEx Switzerland
- Andrea Glässel: Collaborator, Coordinator DIPEx Switzerland, expert in qualitative health research
- Andrea Radvanszky: Sociologist and qualitative researcher, DIPEx modules Dementia & Young Hemato-oncological Patients
- Giovanni Spitale: DIPEx data manager
Financed by: Swiss National Science Foundation (SNSF – NRP 83)
Duration: 2025 – 2029
Affiliations:
- DIPEx Switzerland
- DIPEx International
- Digital Health Design Living Lab (DHD LL)
- ZHAW (Zurich University of Applied Sciences)
- University of Lausanne
Current Focus:
- Exploring lived experiences of individuals with Variations of Sex Characteristics (VSC) and their families
- Developing a virtual “living library” of patient and family narratives
- Designing decision aids for ethically complex situations
- Training healthcare providers as navigators and Shared Decision-Making coaches