Developing a trustworthy national health data space: public needs and policy implications

Abstract Background The ongoing development of a national health data space in Switzerland presents an opportunity to transform health delivery and care by enabling large-scale secondary health research. Central to this development is the Health2030 strategy, which calls for the establishment of public trust in the reliability and security of data collection, storage, and exchange. Methods We conducted four focus groups across the German, French and Italian-speaking regions of Switzerland to inform the development of the Swiss health data space that fosters public trust. To inform Swiss policy, we held a panel discussion with patient experts and healthcare professionals to translate the focus group findings into governance and public communication requirements. We synthesized our findings using a thematic analysis approach and proposed a guiding health policy strategy. Results Citizens perceive the health data space as trustworthy conditional on the delivery of its promised higher levels of transparency, security, and lower risk compared to other data sharing initiatives. To ensure its trustworthiness, citizens call for the provision of value-based consent to control data access based on the actors involved and research purposes, alongside implementing accountability measures for data misuse. Governance framework requirements entail establishing an advisory group for the health data space with sufficient representation of the Swiss population, including members of the public, patient advisory groups, and researchers. Public communication requirements call for ongoing monitoring of public opinion on health data space, alongside establishing public engagement initiatives, such as public fora, to inform ongoing progress. Conclusions Policy efforts should prioritize the meaningful involvement of relevant stakeholders throughout all stages of the health data space development to foster trust. Central to these efforts is balancing public expectations with their practical implementation. Key messages • For the health data space to be trustworthy, citizens require transparency on their data use and the security measures taken, value-based consent for data access, and accountability measures. • Diverse representation in governance and continuous public involvement are key policy measures to build public trust in the development of national health data spaces.