Journal article 10 views
PHIRI: lessons for an extensive reuse of sensitive data in federated health research
,
Javier González-Galindo,
Francisco Estupiñán-Romero ,
Martin Thißen ,
Ronan Lyons ,
Carlos Telleria-Orriols,
Enrique Bernal-Delgado
European Journal of Public Health, Volume: 34, Issue: Supplement_1, Pages: i43 - i49
Swansea University Author:
Ronan Lyons
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DOI (Published version): 10.1093/eurpub/ckae036
Abstract
Background: The extensive and continuous reuse of sensitive health data could enhance the role of population health research on public decisions. This paper describes the design principles and the different building blocks that have supported the implementation and deployment of Population Health In...
| Published in: | European Journal of Public Health |
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| ISSN: | 1101-1262 1464-360X |
| Published: |
Oxford University Press (OUP)
2024
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| Online Access: |
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| URI: | https://cronfa.swan.ac.uk/Record/cronfa68530 |
| Abstract: |
Background: The extensive and continuous reuse of sensitive health data could enhance the role of population health research on public decisions. This paper describes the design principles and the different building blocks that have supported the implementation and deployment of Population Health Information Research Infrastructure (PHIRI), the strengths and challenges of the approach and some future developments. Methods: The design and implementation of PHIRI have been developed upon: (i) the data visiting principle—data does not move but code moves; (ii) the orchestration of the research question throughout a workflow that ensured legal, organizational, semantic and technological interoperability and (iii) a ‘master–worker’ federated computational architecture that supported the development of four uses cases. Results: Nine participants nodes and 28 Euro-Peristat members completed the deployment of the infrastructure according to the expected outputs. As a consequence, each use case produced and published their own common data model, the analytical pipeline and the corresponding research outputs. All the digital objects were developed and published according to Open Science and FAIR principles. Conclusion: PHIRI has successfully supported the development of four use cases in a federated manner, overcoming limitations for the reuse of sensitive health data and providing a methodology to achieve interoperability in multiple research nodes. |
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| College: |
Faculty of Medicine, Health and Life Sciences |
| Funders: |
This project was received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement number 101018317. |
| Issue: |
Supplement_1 |
| Start Page: |
i43 |
| End Page: |
i49 |