The Swiss Personalized Health Network (SPHN) promotes the development, implementation, and validation of coordinated infrastructures to make health data interoperable and shareable for research in Switzerland. SPHN’s efforts are aimed towards establishing a data-driven health ecosystem. Such an ecosystem is key for research in personalised medicine, and, eventually, for personalised clinical applications, such as more precise diagnostic, therapeutic, and prevention strategies.
“To develop science-based personalised healthcare in our country, research and clinical decision-making need to rely on real-world health data. Since 2017, SPHN has developed numerous infrastructures, technologies, and methods enabling researchers and clinicians to safely use large sets of health data in a responsible, ethical, and legal manner.”
© UKBB
Prof. Urs Frey, Chairperson National Steering Board SPHN
SPHN was mandated by the Swiss government in 2017. Co-managed by the Swiss Academy of Medical Sciences (SAMS) and the SIB Swiss Institute of Bioinformatics, SPHN has brought together Swiss university hospitals, universities, research institutions and organizations, funders, government agencies, and patient organizations from all across Switzerland. Building a common understanding between these stakeholders on how sensitive health data can be shared in the strongly federated Swiss environment is a key success factor for SPHN.
Significance for patients
SPHN addresses patients’ needs from various angles:
- Patients are included in the highest governing body of SPHN and in its Ethical, Legal, and Social Implications (ELSI) Advisory Group, giving them a voice on a governance level.
- SPHN has co-funded projects that bring personalised medicine close to clinical practice. For instance, SPHN funding has supported efforts to make oncological data shareable (interoperable) throughout Switzerland, facilitating a Swiss Molecular Tumour Board to identify more personalised treatment options based on the genetic sequences of tumour cells.
- SPHN provides guidelines and contract templates for the responsible and compliant sharing of health data for research purposes. Although these efforts do not benefit individual patients directly, they advance personalised health research and build trust between patients, healthcare providers, and researchers.
- Recognizing the value of patient and citizen involvement, SPHN supports and collaborates with the Swiss Clinical Trial Organization in mapping patient- and citizen-involvement initiatives in Switzerland to bring patient involvement to the next level.
SPHN funding
To bring personalised medicine closer to practice, SPHN funds projects in a top-down as well as a bottom-up manner. Top-down, SPHN funding flows to all five Swiss university hospitals to develop data management systems for the exchange of interoperable clinical routine data. These systems primarily serve research purposes but will be valuable for healthcare quality and public health monitoring, too. Bottom-up funding flows, on the one hand, into infrastructure development projects addressing specific infrastructural bottlenecks of personalised health research, for instance by developing a data encryption tool for federated analyses. On the other hand, SPHN has funded “driver” projects to develop and test data infrastructures to answer medically relevant research questions. During the first four years of SPHN (2017-2021), 24 bottom-up projects were funded by SPHN, spanning a large area of personalised health research from patient consent management to machine learning models for sepsis detection. Currently, SPHN assesses how the products and tools of these projects can be implemented in centers throughout Switzerland in a sustainable manner. SPHN also prepares new funding calls aiming at the consolidation of previously developed infrastructures.
Data & data governance
SPHN largely builds upon existing and federated data sources and infrastructures across the country. It has taken significant steps towards making health data FAIR (findable, accessible, interoperable and reusable) for research in Switzerland. These efforts are orchestrated by a central SPHN Data Coordination Center (DCC) and based on an SPHN-wide data interoperability framework. The framework has established strong semantic definitions, international medical ontologies and standards, and flexible data exchange formats, able to serve diverse use cases and applications in healthcare, biomedical research and data science, independent of the desired data model.
To establish a personalised health ecosystem in which data can be shared responsibly and securely, SPHN addresses issues concerning data governance at all levels, from the overarching “Ethical Framework for Responsible Data Processing in Personalised Health Research” to specific templates facilitating adherence to the legal and ethical requirements of multicenter human research projects. Overcoming the complex legal environment resulting from regional laws, SPHN has worked towards achieving agreements to streamline administrative processes and stimulated local and central support structures to further facilitate research.
BioMedIT
An indispensable infrastructure in the SPHN landscape is the BioMedIT network, designed for large-scale multi-center research projects with sensitive data from different sources. BioMedIT connects three high-performance computing facilities – “nodes” – affiliated to universities in Zurich (ETHZ), Basel, and Lausanne, enabling collaborative but secure data access and processing. The cloud architecture of the network, with designated entry points for end-to-end encrypted data transfers from various data providers and a central portal for data access and user management by authorized researchers, is scalable to include many more data sources and users in the future. This central infrastructure grants data protection by design and has organizational and technical security measures in place to guarantee confidentiality, integrity, availability and resilience of the systems.
© Blossom Sàrl 2020
Figure: Interoperable health-related data from different sources are locally encrypted and transferred into the secure BioMedIT network, where they can be accessed by authorized researchers and clinicians conducting collaborative research projects. This is an important basis for developing personalised medicine approaches.
Future aims
Currently in its second funding period (2021-2024), SPHN aims to consolidate the existing infrastructure and expand the scope of accessible clinical variables and data sources, including omics data, in “National Data Stream” platforms. These shall close the loop from research to clinical care and health decision making for the benefit of patients. SPHN collaborates with the Global Alliance for Genomics in Health (GA4GH). The strongly federated character of SPHN may inspire other initiatives aiming to bridge data silos at the regional, national, European or international level.
