The role of trust in European health data sharing policies
2023 - 2026
Health data is the blood of health systems, and the COVID -19 pandemic vividly showcased that up-to-date data is key to shape evidence-informed health policy, to organise and improve health systems, but also to respond to crises.
For a successful implementation of cross-country health data sharing in Europe, as for example with the European Health Data Space (EHDS), the trust of citizens and professionals is crucial. But what are policymakers and policies do to ensure that trust in health data sharing is strengthened by their policies?
Our aim is to explore the role of trust in health data sharing within the health policy process by combining a policy analysis at European and national level (Italy, France, Switzerland) with interviews with key stakeholders in Brussels and the three countries.
Even if policy requirements for health data sharing are met, public and professional trust is essential for the realisation of the EHDS initiative. While efforts have been made to understand citizens’ and professionals’ perceptions of health data sharing in Europe, policymakers may have different interpretations of the meaning of trust and lack clarity on how to make sure trust is built through their policy documents. To contribute to filling this gap, we examine how the “trust issue” is addressed in the policy process from the agenda-setting in Brussels to the implementation phase at a local level. To do so, we combine a policy analysis at European and national level (Italy, France, Switzerland) with interviews with key stakeholders in Brussels and the three countries to ultimately develop a guide to help policymakers consider and address the trust issue in their work.
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.
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).
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.
Funding: The project is financed by the Digital Society Initiative, University of Zurich