Governing uncertainty: Trust breakdowns and repair in European health data governance

Background

The secondary use of health data is central to European initiatives such as the European Health Data Space. These initiatives rely on public trust, yet uncertainty surrounding data flows, reuse, and governance remains pervasive. Existing approaches largely treat trust as something that can be secured through preventive design. This study instead examines how trust is negotiated by focusing on moments where it breaks down.

Methods

We conducted two online focus group interviews, one with citizens/patients and one with data holders/users across Europe. Discussions were structured around real-world data breach cases.

Results

Three dynamics emerged. First, trust was rendered fragile through minor breaches, delayed or unclear communication, and mediated apologies, often interpreted as signs of institutional distance and self-protection. Second, trust repair was understood as a procedural balancing act: formal frameworks were seen as necessary but insufficient unless combined with contextual judgement, direct accountability, and visible care. Third, participants highlighted tensions between institutional imaginaries of control and lived experiences of uncertainty, particularly regarding future data use, re-identification risks, and uneven vulnerability.

Conclusions

Findings show that trust is shaped by how institutions respond to data breaches rather than by preventive measures alone. Participants consistently identified delayed communication, lack of clarity, and indirect accountability as drivers of mistrust, while timely, transparent, and context-sensitive responses supported continued willingness to share data.We conceptualise these dynamics as an ecology of risk. The study points to the need for strengthened public health governance through a) improved breach response practices, b) development of frameworks combining standardisation with contextual judgement, and c) greater involvement of patients and citizens in response design.

Key messages

• Trust is shaped by how institutions respond to breakdowns, not only by how they prevent them.

• Governance frameworks must balance standardisation with contextual responsiveness to maintain legitimacy.