Operationalising public trust for health policymakers - A qualitative study in the EU, France, Italy, and Switzerland
Year: 2025
Type: article
Abstract: 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.
Source: Health Policy
Institutions: University of Zurich, Swiss School of Public Health
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: hybrid
Estimated APC paid: $4,220
OpenAlex ID: W4412048396