From buzzword to toolkit: Two DSI members make trust tangible for WHO/Europe
Trust is seen as key to digital health policy, yet it often remains vague. With a new tool for WHO/Europe, DSI members Felix Gille and Federica Zavattaro show how trust can be built into health policies and legislation in a targeted way.
Trust can affect whether people are willing to share their health data and whether digital health initiatives succeed. But how can policy and legislation foster trust in practice? The World Health Organization (WHO) Regional Office for Europe has published a new resource for this purpose: «the Trust-building self-assessment tool for health data policies in the digital age in the WHO European Region». The tool was developed by two members of the Digital Society Initiative (DSI) at the University of Zurich: DSI postdoc Felix Gille and DSI alumna Federica Zavattaro, from the 2022 cohort of the Excellence Program (PhD). The self-assessment tool is designed for policy professionals across the WHO European Region and was iteratively developed through consultation with 18 policy professionals from 17 countries and institutions, including the European Commission. Felix Gille and Federica Zavattaro explain why good intentions alone don’t build trust, and why too much of it can be harmful.
Building trust is central to policy-making. Why does health policy so rarely succeed at it?
Felix Gille: It is not necessarily that health policy rarely succeeds in fostering trust, it is more so that a gap exists between recognising that trust matters for translating digital health policy into practice and knowing how to address it through policy as a basis for trustworthy digital health systems. Our previous research shows that policy professionals often regard trust as important for participation and implementation, yet experience it as an abstract concept that is difficult to operationalise. This is evidently a missed opportunity.
How does the tool you developed make the abstract concept of trust tangible?
Federica Zavattaro: The WHO «Trust-building self-assessment tool for health data policies in the digital age in the WHO European Region» is conceptually based on our previous research investigating public trust in digital health systems. The tool itself was developed with and for policy professionals, through an iterative process. It offers practical guidance for those involved in formulating and revising digital health policies.
The tool first invites users to consider trust as relational and context-specific, before assessing how trust-building principles are integrated into policy texts for implementation. Designed to be adaptable across governance systems and policy contexts, it is most valuable when used participatively, bringing together policy professionals, ministry staff and other relevant actors to identify gaps, set priorities and agree on follow-up action. By breaking trust into manageable components, it makes trust a practical consideration in policy development rather than an aspiration added at the end or success indicator alone.
You developed the tool with experts from 17 countries. Does trust work the same way everywhere?
Felix Gille: Trust is relational and context-specific, so it would be difficult to say that it works in exactly the same way everywhere. Previous positive and negative experiences with public institutions, health systems and digital initiatives shape how people judge whether a system is trustworthy. The tool reflects this by first asking policy professionals to consider the relevant context, including past experiences and the actors involved.
At the same time, our research and the wider literature point to several broadly shared principles for trustworthy digital health systems, including privacy protection, accountability, traceability of data use and clear, appropriate communication about the digital initiative. The tool combines these shared principles with prompts that allow policy-makers to adapt them to their own institutional and social context.
Can there be such a thing as too much trust?
Felix Gille: Yes. A healthy degree of checks and balances can strengthen trust overall. In healthcare and other sectors, intentional points of scrutiny help maintain quality and accountability, which can be described as ‘healthy mistrust’. It keeps stakeholders alert to potential problems and encourages critical reflection. Blind trust, by contrast, should be avoided. It can discourage questioning, reduce critical thinking and create unhealthy dependencies, which is not what we want to foster.
Where does Switzerland still need to catch up when it comes to trust in health data?
Federica Zavattaro: Switzerland still needs to address the legacy of the national electronic patient dossier (EPD), whose difficult implementation continues to echo in debates on health data sharing. Our research points to priorities for learning from the EPD and avoiding similar setbacks: stronger federal coordination, meaningful collaboration with stakeholders, and early, sustained engagement with the public and healthcare professionals, who are key actors in the trust relationship. With promising health data-sharing initiatives planned under the DigiSanté programme, these lessons are particularly important. Otherwise, implementation delays and negative narratives risk being repeated, undermining trust in current and future initiatives.
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Dr Felix Gille is a postdoctoral researcher at the University of Zurich’s Digital Society Initiative, specialising in trust, digital transformation, and health data. Felix also works at the Swiss Federal Chancellery on trustworthy data ecosystems. His background is in European public health and health policy. He is the author of the book What Is Public Trust in the Health System? – Insights into Health Data Use published by Policy Press.
Dr Federica Zavattaro is a postdoctoral researcher specialising in trust from the perspectives of health policy, ethics and data governance. She completed her PhD at the University of Zurich’s Digital Society Initiative in 2026, focusing on trust in European health data-sharing policy, as part of which she co-developed the WHO self-assessment tool. She now researches public benefit and public trust in health data use with the Universities of Augsburg and Oxford, and public interest in health data sharing with the University of Bern.