Background: Public trust is central for the successful implementation of health data sharing initiatives, and it is partly shaped by the public's past experiences with the system. Understanding how these experiences have framed current public trust is essential to adequately inform trust-building measures in current and future health data sharing initiatives. The aim of the present study was to trace the evolution of the sociopolitical discourse surrounding health data sharing in Switzerland from 1992 to the present by identifying (1) key policy documents; (2) opinion-shaping and (3) negative events influencing public experience and trust in health data sharing over the last 31 years; (4) implementation obstacles and (5) lessons learned throughout this period. The analysis offers the opportunity to reflect on challenges in implementing data sharing initiatives and their impact on public trust, aiming to provide insights for guiding Swiss and European policymakers in designing future health data sharing initiatives while fostering public trust. Methods: We designed a multi-method study comprising (A.I) a thematic analysis of online interviews with key stakeholders and (A.II) a scoping review of expert opinion papers to capture expert perspectives; (B) a policy analysis of government policies to comprehend the political trajectory of the health data sharing discourse; and (C) an analysis of news articles across eight major Swiss newspapers to trace the evolution of the media narrative around data sharing. Results: While the digitisation of private life in the early 2000s and the COVID-19 pandemic positively influenced Switzerland's sociopolitical discourse on health data sharing, triggering policy waves on the primary and secondary use of health data, recent setbacks with the Electronic Patient Dossier (EPD) initiative negatively impacted public trust. Key obstacles to EPD implementation were identified across policy, public, professional and technical levels, providing valuable lessons and actionable recommendations for improving the implementation of current and future health data sharing initiatives. Conclusions: The sociopolitical discourse on health data sharing in Switzerland is mainly framed by past and present negative narratives on the EPD, compounded by national and international scandals. It is recommended to centralise coordination at the federal level and to foster stakeholder collaboration. To build and maintain public trust, comprehensive public engagement strategies and user-friendly solutions that offer citizens autonomy are needed. Also, careful narrative management is essential. Healthcare professionals should be actively involved in the development and policymaking process from the outset and provided with financial support to facilitate their digital transition. Considering the promising health data sharing initiatives under the DigiSanté programme, adopting these recommendations is essential to avoid delays, negative narratives and further erosion of public trust in Switzerland's health data sharing initiatives.
Zavattaro et al. (Tue,) studied this question.
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