Focus on the group’s mission
SIB's Personalized Health Informatics (PHI) plays a key role in the development of the Swiss Personalized Health landscape. It does it by building the infrastructure backbone and bringing together the key decision makers to build a scalable and sustainable research environment.
Its role is to establish mechanisms enabling nationwide interoperability and responsible sharing of health-related data, in particular in the context of the Swiss Personalized Health Network initiative (SPHN), to lay the necessary foundations to facilitate data-driven research projects.
To ensure high-quality care and patient safety in the long term, healthcare and research must go hand-in-hand. In the context of the Swiss Personalized Health Network (SPHN), we have thus made health-related data in Switzerland available for research in a lasting way. This is done through their FAIRification* and the national secure IT infrastructure BioMedIT
The PHI group manages the SPHN Data Coordination Center (DCC) and the BioMedIT network – a national IT platform enabling secure health-data exchange and processing for research. PHI also serves as a central hub for ethical and legal support to data-driven research consortia and for training in the fields of interoperability, data semantics, FAIR data as well as information security.
Cross-institutional collaboration
As the SPHN Data Coordination Center, the group is the contact point for all SPHN funded projects and infrastructure, supporting cross-institutional collaborations throughout the country, and interfacing between all health-data research stakeholders with regards to technical, semantic interoperability, FAIR data and health-data governance issues.
BioMedIT and infrastructure implementation
Given the sensitive nature of health-related information, research using patient data calls for high levels of security and data protection in Information and Communication Technology (ICT) infrastructures. It also calls for specific processes and expertise, in order to fulfil stringent legal, regulatory and ethical requirements. The key challenge here is to provide researchers with an integrated solution. In close collaboration with the network partners, the PHI group set up the BioMedIT network as part of SPHN to provide all authorized researchers in Switzerland easy access to collaborative analysis of confidential data without compromising data privacy.
Read more about this flagship project
Under the umbrella of the DCC, the PHI group operates a central service layer and is responsible for the coordination, the management and the direction of the implementation of the BioMedIT network components.
Data privacy, IT security, ethical and legal aspects
When dealing with sensitive health-related information, data protection and IT security are of paramount importance. These aspects are thus at the core of SPHN and BioMedIT.
Together with the BioMedIT nodes and security experts, PHI ensures that developments in relation to the network fulfil the highest standards to ensure ethical and legal compliance. In addition and in close collaboration with SIB’s legal department, PHI supports researchers on ethical and legal issues, develops guidelines regarding the responsible use of health-data, and provides a consistent legal and regulatory framework for multi-site research projects.
Read about SIB’s legal expertise on Open Research Data in the biomedical context
Data standards and semantic interoperability
To enable the FAIR use of health data for research, the PHI group, in collaboration with SPHN partners, has developed the SPHN semantic interoperability framework and a corresponding tool stack. This includes for instance the SPHN connector tool to enable faster sharing of clinical data in the standard adopted nationwide.
The framework is based on a semantic determinant of concepts (SPHN Dataset) that allows project variables to be represented semantically, and a syntactic specification for how the relations between data elements are mapped. A graph representation is used as the exchange format, addressing the FAIR principles and allowing maximum flexibility for data merging and data analysis, also with a view to extending the core dataset according to project-specific requirements.
Metadata catalogues and feasibility tools
To make health-related data “Findable” the PHI group supports the cataloging of meta-data into appropriate directories, e.g., cohort meta-data in the international Catalogue Maelstrom. In addition, a federated query system has been set up over all five University Hospitals, to enable feasibility queries for researchers and to design and optimize study protocols.
Training and information
In the realm of SPHN, the PHI group develops and supports the production of various training materials regarding:
- Responsible use of health-related data for research
- FAIR health-related data for research
- BioMedIT: research with sensitive data
