Dissertation Annina Bauer

Abstract

In today's world, data plays a crucial role in various aspects of life, particularly in the healthcare sector. The integration of digital technologies and data science has led to a significant transformation in healthcare, providing valuable insights into diseases and treatments on a global scale. General Consent (GC) is a tool utilized by many hospitals to enable further use of health-related data and biological samples for research. However, its conceptual nature also gives rise to various ethical questions, particularly concerning patient autonomy.

The primary objective of our research was to enhance the patient-friendliness of the USZ GC. Initially, we investigated the factors influencing GC status (known/unknown) and choice (yes/known) at the University Hospital Zurich (USZ), followed by an examination of the current trend towards Patient and Public Involvement (PPI) in clinical research. Subsequently, a workgroup (including patient representatives) was formed with the aim of creating patient-friendly information materials on GC for the USZ. The study resulted in the development of a GC website, a GC video and a GC infographic as part of the GC form. Our study helped to make significant strides in establishing a robust foundation for PPI at USZ as and has contributed to enhancing patient autonomy within the USZ GC process. However, ongoing discussions are crucial for addressing digitization challenges in data research and evaluating the risks and benefits associated with methods such as artificial intelligence.

Annina Bauer