Navigation auf uzh.ch
Navigation auf uzh.ch
Access to secondary health data is crucial to enable scientific advancements in health-related research and improving health system management. In Switzerland, efforts have been made over the past 20 years to provide access to healthcare data for health system actors, researchers, and the public. However, technical, legal, and political obstacles, along with societal concerns, have been significant barriers to progress. In response to this, among other initiatives, the Federal Office of Public Health (FOPH) launched the «Data room for health-related research» initiative. The initiative aims to provide a comprehensive ecosystem for sharing health data for research, otherwise referred to as the health data space, as well as clear framework conditions for health-related research.
Researchers and healthcare organizations stress that maintaining high levels of public trust is essential for the successful implementation and acceptance of health data sharing infrastructures. This is a significant concern due to the sensitive nature of personal health data, for which additional data protection requirements need to be met. Therefore, gathering input on what in the public eye a trustworthy health data space for secondary data use is, will help to inform its development. Equally as important are the requirements of other involved stakeholders, including data producers for the health data space, to have a common understanding of what makes secondary use trustworthy. This emphasizes the need to clarify expectations in order to establish framework conditions for trustworthy data reuse for health-related research that are acceptable to all stakeholders.
A national solution is essential to enable widespread access to secondary health data by all health system actors while ensuring the highest level of public trust. In turn, our project aims to guide Swiss health policymaking in creating a trustworthy health data space that is anchored in a public understanding of trustworthiness. In collaboration with our partners from the Federal Office of Public Health and «foraus - Forum Aussenpolitik», as well as funded by Novartis International AG and the Sanitas Krankenversicherung (Stiftung), we plan to conduct a qualitative study that places the public at the center of our research. Our project’s output aims to offer actionable guidance for Switzerland's ongoing health data spaces policy development, complemented by media outputs and events to disseminate insights and foster public discourse.
Project Team
Research Partner
foraus
Advisory body
Funding
Novartis International AG and the Sanitas Krankenversicherung (Stiftung)
