Trustworthy data spaces

With our “Trustworthy data spaces” project, we aim to launch a national debate on the future of the Swiss health data space, initiated by the population and led by young people, and discuss innovative solutions on how an optimal and trustworthy data infrastructure can function for our country.

Phases of the project

• September 2023 – February 2024: Conceptualisation
  
• March 2024: Participatory workshops in several Swiss cities with (1) young people in training and (2) stakeholders.
  
• April 2024 – August 2024: Analysis of the results
  
• 2024: Publication of the results

Political context

The possibility to access and use health data is critical to the success of a wide range of activities that include among others: health system management and improvement, digital transformation of healthcare, disease prevention, biomedical research, drug and health technology development. This need is recognised in Switzerland for more than 20 years without resulting in the implementation of solutions to grant health system actors and patients comprehensive access to health data. Next to technical, legal and political obstacles, societal concerns are considered as key barriers. Researchers and professional healthcare organisations highlight that especially high levels of public trust are key to the successful implementation and acceptance of health data sharing infrastructures. In the context of altruistic motivated health data donation for research to benefit others and the future society, data sharing can be associated with increased social cohesion and solidarity. Unfortunately, the present digitalisation gap is not only hindering prosperity but also threatens the health of the public as vividly demonstrated by the COVID-19 pandemic.

In response to this need we see across Switzerland a range of initiatives and solutions evolving to provide possible ways to facilitate health data use and transfer. Often these solutions are either constrained by a geographic focus or sector boundaries. However, the Swiss Federal Council launched explorations into the idea of establishing trustworthy data spaces (Collovà et al., 2021). More specifically, the Swiss Federal Council explicitly reports in the 2022 response to the Humbel Postulate that several state authorities are commissioned to design a health data ecosystem (Der Bundesrat, 2022). Hence, throughout 2023, the Federal Office of Public Health will be working on different possibilities to redesign consent mechanisms to use health data for research purposes, as well as to establish unique identifiers, a data coordination body, and FAIR data use principles. The result of this policy work is expected to be brought forward to Parliament eventually. In the same vein, the Federal Council has stated his intention that researchers should in the future be able to access electronic health record data, given patient consent, which would require legislative changes.

This is why we anticipate that a national solution is needed that on the one hand allows all health system actors to access and use health data, and on the other hand enjoys the highest levels of public trust. If we have a precise understanding of what the public considers as trusted health data use, including by private sector actors, we will be able to construct appropriate data governance structure that have public trust at its core. At the same time, European developments (see European Health Data Space proposal) should be included in the considerations about the future Swiss health data ecosystem and public trust related to it.

Therefore, the aim of this project is to advice Swiss health policy making to build a trustworthy health data space that is co-designed with the public and carries public trust at is heart.