Operationalising public trust for health policymakers - A qualitative study in the EU, France, Italy, and Switzerland

Background

Public trust is crucial for the success of health data-sharing initiatives (HDSIs), as it influences public participation. Although the potential for policies to actively foster trust is widely acknowledged, recent policy analyses suggest that this opportunity is often overlooked in practice.

Objective

To investigate if and how health policymakers at the European Union level and in France, Italy, and Switzerland prioritise and integrate public trust into their policy work, identifying key gaps and providing preliminary guidance to bridge them.

Methods

We conducted 57 semi-structured online interviews with policymakers involved in HDSIs at different stages of the policy process: 20 at the European level, 11 in France, 13 in Italy, and 13 in Switzerland. An inductive thematic approach was employed to identify emerging themes.

Results

Policymakers recognise public trust as crucial for public participation in HDSIs, yet no shared definition of trust in health data-sharing emerged. In France, trust-building is treated as a policy priority and embedded in stakeholder and public engagement processes prior to legislation. At the European, Italian, and Swiss levels, trust remains a vague concept, addressed implicitly without clear strategies. Policymakers highlighted the absence of specific guidance on trust-building and called for its development.

Conclusions

We identified a lack of harmonisation among policymakers regarding the definition of public trust and its translation into policy. In response, we propose a working definition of public trust in health data-sharing and highlight the urgent need for concrete, actionable tools to support policymakers in integrating trust-building principles into health data-sharing policies.