PHIRI in the European Health Data Space for secondary use of health data

A few weeks ago in Berlin, in the context of the European Public Health Annual Conference, PHIRI presented credentials as an experience that could well inspire the development of the upcoming European Health Data Space, and especially the new decentralised EU-infrastructure for the secondary use of health data (for research, innovation and policy making) - HealthData@EU, which will be set up to support cross-border health data exchange.

Our colleague Enrique Bernal Delgado, who is leading the PHIRI activities related to the establishment of the Federated Research Infrastructure, has been reflecting of this topic, and is sharing some insights about the role of PHIRI within the new landscape shaped by the upcoming European Health Data Space regulation.

"Immersed, as we all are, in the very debate of a thorough European regulation that is setting the legal and ethical foundations of HealthData@EU, outlining the principles of interoperation across countless data institutions and data access bodies across Europe, as well as discussing on what should be the technological architecture of such an space and how data could be trusted, in a nutshell, setting up the bases for a systematic reuse of existing health data, PHIRI achievements are a tangible demonstration of the feasibility of this massive endeavour.

What does make PHIRI such an interesting primer?

PHIRI has been able to:

• mobilise linked individual sensitive data from multiple data sources, curated and persisted in multiple institutions while preserving personal privacy and data safety.
• respond to a number of policy-relevant questions using a federated approach, assuring semantic and technical interoperability across the participant data sets and institutions.
• orchestrate 15 public institutions to yield research results, institution that will become data institutions or access bodies in the future HealthData@EU.

Finally, PHIRI, is effectively acting as an interface between the community of population health researchers and the infrastructure of HealthData@EU.

How the community of population health researchers will benefit from PHIRI as an interface?

PHIRI will be providing guidance and advise on how to navigate the HealthData@EU; in particular, how to discover data of their interest, ask for permission and, eventually, access the data.

Through the European Health Information Portal, PHIRI is implementing a vast knowledge based of data institutions and data sources that will help researchers to know what data exists, where it is curated and persisted, and how it could be accessed.

PHIRI has developed a research workflow that is generalizable to any research question of interest for public health and population health research.

PHIRI, as a research infrastructure, is preparing for scaling up throughout the implementation and deployment of proxy datasets, data quality algorithms, analytical pipelines, virtual data labs, and a secure processing environment, services that will be made available to population health researchers.

Moreover, PHIRI is also designing a capacity building program to make the most out of the data and data sciences."

• Learn more about the PHIRI federated research infrastructure: https://www.phiri.eu/wp7
• Learn more about the pilot activities carried out as Research Infrastructure through research use cases by pooling data across European countries: https://www.phiri.eu/wp6