The Swiss Pathogen Surveillance Platform - towards a nation-wide One Health data exchange platform for bacterial, viral and fungal genomics and associated metadata.

The Swiss Pathogen Surveillance Platform (SPSP) is a shared secure surveillance platform between human and veterinary medicine, to also include environmental and foodborne isolates. It enables rapid and detailed transmission monitoring and outbreak surveillance of pathogens using whole genome sequencing data and associated metadata. It features controlled data access, complex dynamic queries, dedicated dashboards and automated data sharing with international repositories, providing actionable results for public health and the vision to improve societal well-being and health.

Sensing the (digital) pulse. Future steps for improving the secondary use of data for research in Switzerland.

Introduction: Ensuring that the health data infrastructure and governance permits an efficient secondary use of data for research is a policy priority for many countries. Switzerland is no exception and many initiatives have been launched to improve its health data landscape. The country now stands at an important crossroad, debating the right way forward. We aimed to explore which specific elements of data governance can facilitate - from ethico-legal and socio-cultural perspectives - the sharing and reuse of data for research purposes in Switzerland. Methods: A modified Delphi methodology was used to collect and structure input from a panel of experts via successive rounds of mediated interaction on the topic of health data governance in Switzerland. Results: First, we suggested techniques to facilitate data sharing practices, especially when data are shared between researchers or from healthcare institutions to researchers. Second, we identified ways to improve the interaction between data protection law and the reuse of data for research, and the ways of implementing informed consent in this context. Third, we put forth ideas on policy changes, such as the steps necessary to improve coordination between different actors of the data landscape and to win the defensive and risk-adverse attitudes widespread when it comes to health data. Conclusions: After having engaged with these topics, we highlighted the importance of focusing on non-technical aspects to improve the data-readiness of a country (e.g., attitudes of stakeholders involved) and of having a pro-active debate between the different institutional actors, ethico-legal experts and society at large.

The devil is in the details: an analysis of patient rights in Swiss cancer registries.

Cancer registries are an important part of the public health infrastructure, since they allow to monitor the temporal trends of this illness as well as facilitate epidemiological research. In order to effectively set up such registries, it is necessary to create a system of data collection that permits to record health-related information from patients who are diagnosed with cancer. Given the sensitive nature of such data, it is debated whether their recording should be based on consent or whether alternative arrangements are possible (eg, opt-out systems where information is automatically collected but patients can later withdraw). In the recent reform of the Swiss cancer registration legislation, the lawmaker set out to implement rules about the recording of data in cancer registries that would allegedly go beyond a consent-based model, in order to balance accurate registration with respect of patient rights. However, by analysing the operational norms of the new legislation and comparing them with those of other systems, it emerges that the Swiss rules de facto closely resemble a system of registration based on informed consent-in partial contradiction with the objective pursued by the lawmaker. In this paper, we show how the details of a policy are crucial to determine its true nature and we highlight some critical elements-from an ethical standpoint-of the recently reformed Swiss policy on cancer registration.

Evolution or Revolution? Recommendations to Improve the Swiss Health Data Framework.

Background: Facilitating access to health data for public health and research purposes is an important element in the health policy agenda of many countries. Improvements in this sense can only be achieved with the development of an appropriate data infrastructure and the implementations of policies that also respect societal preferences. Switzerland is a revealing example of a country that has been struggling to achieve this aim. The objective of the study is to reflect on stakeholders' recommendations on how to improve the health data framework of this country. Methods: We analysed the recommendations collected as part of a qualitative study including 48 expert stakeholders from Switzerland that have been working principally with health databases. Recommendations were divided in themes and subthemes according to applied thematic analysis. Results: Stakeholders recommended several potential improvements of the health data framework in Switzerland. At the general level of mind-set and attitude, they suggested to foster the development of an explicit health data strategy, better communication and the respect of societal preferences. In terms of infrastructure, there were calls for the creation of a national data center, the improvement of IT solutions and the use of a Unique Identifier for patient data. Lastly, they recommended harmonising procedures for data access and to clarify data protection and consent rules. Conclusion: Recommendations show several potential improvements of the health data framework, but they have to be reconciled with existing policies, infrastructures and ethico-legal limitations. Achieving a gradual implementation of the recommended solutions is the preferable way forward for Switzerland and a lesson for other countries that are also seeking to improve health data access for public health and research purposes.