The collaboration agreements with the five Swiss university hospitals are a key component of SPHN. They provide a standardized framework and the necessary technical infrastructure to make hospital data FAIR and make it available for research purposes.

The ELSIag (Ethical, Legal and Social Implications advisory group) advises SPHN on ethical, legal, and societal challenges relevant to its activities. It raises awareness among stakeholders about regulations and frameworks to ensure research data is handled ethically and consistently.

The Swiss Personalized Health Network (SPHN) cantonal hospital onboarding program aims to standardize data delivery across Swiss healthcare institutions, enabling participation in multi-site personalized medicine research. The participating hospitals currently entail—Cantonal Hospital Lucerne (LUKS), Cantonal Hospital Aarau (KSA), Ente Ospedaliero Cantonale (EOC), Cantonal Hospital Baden (KSB), Cantonal Hospital St.Gallen (KSSG) and the Swiss Group for Clinical Cancer Research (SAKK). They transform minimal datasets (e.g., demographics, diagnoses, procedures, medications, lab tests, key scores, and vital signs) into an interoperable knowledge graph, adhering to the SPHN Semantic Interoperability Framework and FAIR principles, using international standards like SNOMED CT and LOINC.

The SPHN Connector is a tool developed as part of the SPHN IT architecture strategy led by USZ to facilitate the creation of valid SPHN-compliant graph data based on relational, semantically described data in hospital data platforms.

The Connector is an integral part of the SPHN ecosystem tool stack and services for FAIR data. It interfaces with the DCC Terminology Service, which provides external terminologies such as SNOMED CT, LOINC, and others in a compatible RDF format, and with the SPHN Schema Forge, which generates a project schema, validation rules, and statistical queries from a simple project-specific input.

The SPHN tools and services are listed here. Further information on the SPHN connector will follow soon.

The SPHN Cohort Consortium on Maelstrom contributed metadata from Swiss population-based and disease-specific cohorts to the internationally renowned Maelstrom Catalog to increase their discoverability and usability in national and international research projects.

More information about the SPHN Cohort Consortium on Maelstrom can be found here.

The use of genomic data in healthcare is increasing and genome analysis will soon be considered an integral part of advanced healthcare systems. To fully benefit from emerging opportunities in this area, it is crucial to rapidly initiate coordinated efforts:

• to collect data and knowledge about the genetic structure of the Swiss population;
• to develop a streamlined infrastructure supporting collaborative genomic research;
• to provide researchers and clinicians with secure and efficient access to genomic information.

It builds on two complementary pillars:

1. an infrastructure backbone to support and coordinate genomic data generation, processing, and exchange in a scalable and sustainable manner, including a FAIR data repository allowing reuse of data, and
2. a national reference genomic dataset (Genome of Switzerland) to demonstrate the feasibility of genome data production and sharing at scale.

The SPHN Data Exploration and Analysis System (SPHN DEAS) will enhance cross-hospital data query and feasibility study capabilities. It is being piloted in collaboration with all Swiss university hospitals, the children's hospital in Zurich and our technology partner Tune Insight. This advanced platform enables researchers to securely access aggregated hospital data, conduct feasibility queries, and simple data explorations like value distributions or survival curves for defined cohorts. Incorporating cutting-edge privacy measures like homomorphic encryption and data obfuscation, DEAS will enable researchers to speed up project planning while ensuring the privacy of the patient.

SPHN Metadata Catalog provides researchers with a user-friendly metadata catalog for exploring project metadata and interactively visualizing schemas. The SPHN Metadata Catalog is designed for both human and machine readability and consists of two components: the FAIR Data Point and Schema Scope. This ensures that data is easily accessible and interpretable for a wide range of users, from researchers manually navigating data schemas to automated tools discovering and processing catalog-specific metadata. Built upon the FAIR data point specification and by adhering to the DCAT vocabulary, this tool enhances the FAIRness of SPHN metadata and promotes interoperability with other (inter)national metadata catalogs.

SPHN has developed a framework to share aggregated results derived from routinely collected health data with private partners. This project aims to expand the use of health data to health services research and public health research. In this way it generates further public value of the SPHN data ecosystem.

The proposed solution ensures the responsible use of data and privacy protection. Anonymized data is analysed by a trusted partner, currently the Data Coordination Center (DCC). Only aggregated results are shared with the private partner. The framework reduces hospitals’ administrative burden and creates a scalable solution by mandating the DCC as a coordinating service partner. A single framework agreement which respects institutional governance processes avoids individual contracts with each hospital and thus creates a scalable solution for sharing aggregated results with third parties.