The role of trust in European health data sharing policies

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.

Background

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.