The role of trust in European health data sharing policies
research areas
timeframe
2023 - 2026
contact
federica.zavattaro@uzh.ch
Background:
Health data is the lifeblood of health systems. The COVID-19 pandemic vividly showed that timely data is essential for research, crisis response, and evidence-informed policymaking. Policymakers recognise that public trust is crucial for the successful implementation of health data-sharing initiatives, such as the establishment of data spaces in Europe and in Switzerland, where trust is often framed as an explicit goal in legislation, public speeches, and press releases.
But what role do health data-sharing legislations actually play in fostering trust? Do policymakers share a common understanding of what trust means, and how they can strengthen it through their policy work? And are there tools to support policymakers in actively building trust through policymaking?
We explore these questions through the three studies below
1 – Framework Analysis
By applying an evidence-based framework on “Public Trust in Health Data Sharing”, we analysed 36 health data-sharing legislations from the European Union, Italy, France, and Switzerland to assess the extent to which, and the ways in which, these legislations incorporate references to “trust” and trust-building principles. The results show that
references to “trust” appear mainly in the explanatory memoranda and preambles of EU texts, revealing a disconnection between political discourse and the legal text. When present, trust-building principles were generally implicit. This highlights an opportunity to raise policymakers’ awareness of these principles and to promote their integration into the legal text.
2- Interview Study
We conducted 57 semi-structured online interviews with policymakers involved in health data-sharing initiatives at different stages of the policy process at the European Union level and in France, Italy, and Switzerland. The aim was to examine whether, and how, they prioritise and integrate public trust into their policy work. The findings reveal that policymakers recognise the centrality of trust but view it as abstract and therefore difficult to translate into concrete policy measures, underscoring the need for structured guidance to support them in fostering trust through policymaking.
3 – Self-Assessment Tool
Building on the previous studies and in collaboration with the Data, Evidence and Digital Health Unit, Division of Country Health Policies and Systems at the WHO Regional Office for Europe, we developed the “DigitalTrustTool, a self-assessment tool designed to help digital health policymakers move beyond treating trust as a rhetorical aspiration, and instead embed it as an actionable principle within policymaking. The tool was tested with 18 digital health policymakers across the WHO European Region to evaluate its clarity, usability, and relevance to policymaking.
Manuscript in the process of publication.
Relevance
The EHDS is a central building block for a strong European Health Union. The availability of health data for primary and secondary use represents an invaluable opportunity to improve healthcare services, patient outcomes, research, innovation, policy-making, and regulatory activities.
Goal
The goal of this project is to provide guidance to help policymakers in getting a structured understanding of what trust is and how to make sure that trust is built through their policy actions in the policy process. In particular, the objectives of the project are to provide (1) a proposal for a definition and typology of trust in the health policy domain, with application to data sharing; (2) information for policy-makers at EU level to effectively incorporate the issue of trust into their policy proposals; and (3) guidance for national policymakers on how to ensure that trust is included in the implementation process (independent of Brussels).
Methods
To collect data for this project, we interview policymakers working at the European level and at a national level (Italy, France, Switzerland), and we analyse European and national health policies on health data sharing selected based on the relevance in collaboration with expert lawyers from the countries. We then analyse qualitative data using a thematic approach, and a framework analysis is performed on the selected policy papers.
Relevant Publications:
- Zavattaro, F., von Wyl, V. and Gille, F. (2024) ‘Examining the Inclusion of Trust and Trust‐Building Principles in European Union, Italian, French, and Swiss Health Data Sharing Legislations: A Framework Analysis’, Milbank Quarterly [Preprint]. Available at: https://doi.org/10.1111/1468-0009.12722
- Zavattaro, F., von Wyl, V. and Gille, F. (2025) ‘Operationalising public trust for health policymakers – A qualitative study in the EU, France, Italy, and Switzerland’, Health Policy, 161, p. 105393. Available at: https://doi.org/10.1016/j.healthpol.2025.105393
- Zavattaro, F., Daniore, P., von Wyl, V. and Gille, F. (2025) ‘The sociopolitical discourse on health data sharing in Switzerland: lessons learned from 1992 to 2023 for present public trust building – a multi-method study’, Schweizerische medizinische Wochenschrift, 155(6), pp. 4277–4277. Available at: https://doi.org/10.57187/s.4277
Funding: The project is financed by the Digital Society Initiative, University of Zurich