Focus on the group’s mission
The role of the Personalized Health Informatics Group (PHI) 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.
The PHI Group manages the SPHN Data Coordination Center (DCC) and the BioMedIT network project - a national IT platform enabling secure health-data exchange and processing for research. PHI also serves as a central hub for ELSIag support (the Ethical, Legal and Social Implications advisory group of SPHN) and for training in the fields of interoperability, data semantics, FAIR data as well as information security.
*The Swiss Personalized Health Network (SPHN) is a national initiative launched by the Swiss State Secretariat for Education, Research and Innovation (SERI) and the Federal Office of Public Health (FOPH) aiming to bring Switzerland to the forefront of research in personalized health. Since January 2017, the SPHN has brought together university hospitals, universities and schools of higher education, research institutions, and other organisations involved in the area of personalized health across Switzerland.
Cross-institutional collaboration
PHI’s Data Coordination Center for SPHN is the contact point for all SPHN funded projects and infrastructures, supporting cross-institutional collaborations throughout the country, and interfacing between all health-data research stakeholders with regards to technical, 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, 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. Under the umbrella of the DCC, the PHI group operates a central service layer and is responsible for the coordination as well as the management and direction of the implementation of the BioMedIT Network project.
While PHI supports research infrastructure implementation activities throughout SPHN (e.g. in the University Hospitals, in collaboration with PHRT technology centers, and in the realm of the BioMedIT network), it is also responsible for the implementation of several central components in relation to the FAIRification of data and with regard to the secure transfer, storage and use of sensitive research data.
Data privacy, IT security and ELSI
Dealing with sensitive health-related information, data protection and IT security are of paramount importance and at the core of SPHN and BioMedIT. Together with the BioMedIT nodes and security experts, PHI ensures that developments in relation to BioMedIT fulfil the highest standards to ensure ethical and legal compliance. In addition, and in close collaboration with SIB’s legal department, PHI supports researchers regarding Ethical, Legal and Social Implications topics, develops guidelines regarding the responsible use of health-data, and provides a consistent legal and regulatory framework for multi-site research projects.
Data standards and semantic interoperability
In order to enable the FAIR use of health data for research, the PHI group, in collaboration with the SPHN partners, has developed the SPHN interoperability framework. The framework is based on a semantic determinant of concepts (SPHN Core Dataset) that allows project variables to be represented semantically, and a syntactic specification for how the relations between data elements are mapped (SPHN RDF Schema). 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
In order 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, in order 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 material regarding:
- Responsible Use of Health-Related Data for Research
- FAIR Health-Related Data for Research
- BioMedIT: Research with Sensitive Data
Group Members
Katrin Crameri (Director) - LinkedIn
View all our group members here