Pre-conference: Reuse of sensitive individual data – Methods and tools for a federated approach
Wednesday 8 November, 13:30 - 17:00 Dublin time (starting with network lunch at 12:30)
EUPHA Public health monitoring and reporting section; Population Health Information Research Infrastructure; Institute for Health Sciences (Spain); Robert Koch Institute (Germany); Sciensano (Belgium)
How to approach data privacy and safety issues, the difficulty to discover data sources of value, complex accessing rules, uneven data quality (particularly, non-harmonized data), and limited capacity (personnel and dedicated resources) for an extensive and continuous mobilisation of sensitive data?
The population health research community has a vast experience in the reuse of data for health monitoring and surveillance or healthcare performance assessment. However, there is a gap in the reuse of individual level sensitive data, particularly when mobilising these data requires the linkage of multiple data sources curated in different premises. The gap is greater when it comes to using sensitive data in cross-national research.
The Population Health Information Research Infrastructure (PHIRI) aims to facilitate and generate the best available evidence for research on health and well-being of populations as impacted by COVID-19. Within PHIRI, we are paving the way for a large-scale research infrastructure where multiple population health researchers with multiple research questions will need the mobilisation of multiple data sources from multiple sites across Europe. The PHIRI enhanced infrastructure will provide a variety of services and tools for data discovery, data access, data analysis and research outputs publication following FAIR (Findable, Accessible, Interoperable, Reusable) principles, while improving the capacity of population health researchers´ community in the use of advanced computing tools.
This pre-conference will cover the PHIRI federated research infrastructure achievements and consists of three main elements: an introduction to the PHIRI story as well as the Health Information Portal being a one-stop shop that facilitates access to population health and health care data, information and expertise across Europe, followed by a presentation on the federated approach to enhance interoperability and a section on four real-life research use cases demonstrating pilot activities for the added value of an infrastructure supporting federated analysis by bringing together data from different European countries, and finally an interactive session on how to replicate a use case in a federated infrastructure. We will start by setting the scene and explaining the governance step-wise approach and the technological solutions provided. A second presentation will point out how a broad variety of routine data can be pooled and/or reused for secondary analysis in a distributed way across Europe followed by a testimonial on the benefits and challenges applying the PHIRI federated approach. After introducing the PHIRI Application, the pre-conference will include a hands-on session where participants will build their own Common Data Model, use the PHIRI tools, run analyses using different synthetic data sets and subsequently upload their results adding to already existing research outputs.
Pre-conference participants will be familiarised with the concept of federated analysis and the PHIRI approach. The session is aimed at a broad public health audience including public health practitioners as well as data scientists. Theory will be illustrated through practical examples. Participants will have ample time to interact and share their own experiences. Knowledge and expertise will be shared across Europe.
The detailed programme will follow soon.
- Nienke Schutte, Sciensano (Belgium)
- Enrique Bernal-Delgado, Institute for Health Sciences (Spain)
- Francisco Estupiñán-Romero, Institute for Health Sciences (Spain)
- Martin Thissen, Robert Koch Institute (Germany)
The registration fee is € 75 which includes networking lunch and refreshments.