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FAIR4Health: Findable, Accessible, Interoperable and Reusable data to foster Health Research

List of Authors

  1. Celia Alvarez-Romero ,  
  2. Alicia Martínez-García
    ,  
  3. A. Anil Sinaci ,  
  4. Mert Gencturk ,  
  5. Eva Méndez ,  
  6. Tony Hernández-Pérez ,  
  7. Rosa Liperoti
    ,  
  8. Carmen Angioletti ,  
  9. Matthias Löbe ,  
  10. Nagarajan Ganapathy ,  
  11. Thomas M. Deserno
    ,  
  12. Marta Almada ,  
  13. Elisio Costa ,  
  14. Catherine Chronaki ,  
  15. Giorgio Cangioli
    ,  
  16. Ronald Cornet ,  
  17. Beatriz Poblador-Plou ,  
  18. Jonás Carmona-Pírez ,  
  19. Antonio Gimeno-Miguel
    ,  
  20. Antonio Poncel-Falcó
    ,  
  21. Alexandra Prados-Torres
    ,  
  22. Tomi Kovacevic
    ,  
  23. Bojan Zaric ,  
  24. Darijo Bokan
    ,  
  25. Sanja Hromis
    ,  
  26. Jelena Djekic Malbasa
    ,  
  27. Carlos Rapallo Fernández
    ,  
  28. Teresa Velázquez Fernández
    ,  
  29. Jessica Rochat
    ,  
  30. Christophe Gaudet-Blavignac ,  
  31. Christian Lovis ,  
  32. Patrick Weber
    ,  
  33. Miriam Quintero
    ,  
  34. Manuel M. Perez-Perez
    ,  
  35. Kevin Ashley ,  
  36. Laurence Horton ,  
  37. Carlos Luis Parra Calderón
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Abstract

Due to the nature of health data, its sharing and reuse for research are limited by ethical, legal and technical barriers. The FAIR4Health project facilitated and promoted the application of FAIR principles in health research data, derived from the publicly funded health research initiatives to make them Findable, Accessible, Interoperable, and Reusable (FAIR). To confirm the feasibility of the FAIR4Health solution, we performed two pathfinder case studies to carry out federated machine learning algorithms on FAIRified datasets from five health research organizations. The case studies demonstrated the potential impact of the developed FAIR4Health solution on health outcomes and social care research. Finally, we promoted the FAIRified data to share and reuse in the European Union Health Research community, defining an effective EU-wide strategy for the use of FAIR principles in health research and preparing the ground for a roadmap for health research institutions to offer access to certified FAIR datasets.

This scientific report presents a general overview of the FAIR4Health solution: from the FAIRification workflow design to translate raw data/metadata to FAIR data/metadata in the health research domain to the FAIR4Health demonstrators’ performance.

Corresponding author
Celia Alvarez-Romero
0000-0001-8647-9515
Grant information

This research was financially supported by the European Union’s Horizon 2020 research and innovation programme under the grant agreement No 824666 (project FAIR4Health). Also, this research has been co-supported by the Carlos III National Institute of Health, through the IMPaCT Data project (code IMP/00019), and through the Platform for Dynamization and Innovation of the Spanish National Health System industrial capacities and their effective transfer to the productive sector (code PT20/00088), both co-funded by European Regional Development Fund (FEDER) ‘A way of making Europe’.

The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Copyright
© 2022 Celia Alvarez-Romero (Corresponding Author, Co-Author); Alicia Martínez-García (Co-Author); A. Anil Sinaci (Co-Author); Mert Gencturk (Co-Author); Eva Méndez (Co-Author); Tony Hernández-Pérez (Co-Author); Rosa Liperoti (Co-Author); Carmen Angioletti (Co-Author); Matthias Löbe (Co-Author); Nagarajan Ganapathy (Co-Author); Thomas M. Deserno (Co-Author); Marta Almada (Co-Author); Elisio Costa (Co-Author); Catherine Chronaki (Co-Author); Giorgio Cangioli (Co-Author); Ronald Cornet (Co-Author); Beatriz Poblador-Plou (Co-Author); Jonás Carmona-Pírez (Co-Author); Antonio Gimeno-Miguel (Co-Author); Antonio Poncel-Falcó (Co-Author); Alexandra Prados-Torres (Co-Author); Tomi Kovacevic (Co-Author); Bojan Zaric (Co-Author); Darijo Bokan (Co-Author); Sanja Hromis (Co-Author); Jelena Djekic Malbasa (Co-Author); Carlos Rapallo Fernández (Co-Author); Teresa Velázquez Fernández (Co-Author); Jessica Rochat (Co-Author); Christophe Gaudet-Blavignac (Co-Author); Christian Lovis (Co-Author); Patrick Weber (Co-Author); Miriam Quintero (Co-Author); Manuel M. Perez-Perez (Co-Author); Kevin Ashley (Co-Author); Laurence Horton (Co-Author); Carlos Luis Parra Calderón (Co-Author) Creative Commons License

This work is licensed under a Creative Commons Attribution 4.0 International License.

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Authors & roles

Celia Alvarez-Romero

Group of Research and Innovation in Biomedical Informatics, Biomedical Engineering and Health Economy, Institute of Biomedicine of Seville, IBiS / Virgen del Rocío University Hospital / CSIC / University of Seville, Seville, 41013, Spain

Roles
Corresponding Author, Co-Author, Investigation, Methodology, Validation, Visualization, Writing – Original Draft Preparation
0000-0001-8647-9515

Alicia Martínez-García

Group of Research and Innovation in Biomedical Informatics, Biomedical Engineering and Health Economy, Institute of Biomedicine of Seville, IBiS / Virgen del Rocío University Hospital / CSIC / University of Seville, Seville, 41013, Spain

Roles
Co-Author, Investigation, Methodology, Validation, Visualization, Writing – Review & Editing

A. Anil Sinaci

SRDC Software Research Development and Consultancy Corporation, Ankara, 06800, Turkey

Roles
Co-Author, Investigation, Software, Writing – Review & Editing
0000-0003-4397-3382

Mert Gencturk

SRDC Software Research Development and Consultancy Corporation, Ankara, 06800, Turkey

Roles
Co-Author, Investigation, Software, Writing – Review & Editing
0000-0003-2697-5722

Eva Méndez

Dept. of Library & Inf Sci. Universidad Carlos III de Madrid, Getafe, 28903, Spain

Roles
Co-Author, Conceptualization, Investigation, Writing – Review & Editing
0000-0002-5337-4722

Tony Hernández-Pérez

Dept. of Library & Inf Sci. Universidad Carlos III de Madrid, Getafe, 28903, Spain

Roles
Co-Author, Conceptualization, Investigation, Writing – Review & Editing
0000-0001-8404-9247

Rosa Liperoti

Department of Geriatric and Orthopedic Sciences, Catholic University of Sacred Heart, Roma, 00168, Italy

Roles
Co-Author, Investigation, Validation, Writing – Review & Editing

Carmen Angioletti

Department of Geriatric and Orthopedic Sciences, Catholic University of Sacred Heart, Roma, 00168, Italy

Roles
Co-Author, Investigation, Validation, Writing – Review & Editing
0000-0002-0341-1679

Matthias Löbe

Institute for Medical Informatics (IMISE), University of Leipzig, Leipzig, 04107, Germany

Roles
Co-Author, Investigation, Writing – Review & Editing
0000-0002-2344-0426

Nagarajan Ganapathy

PLRI Institute for Medical Informatics of TU Braunschweig and Hannover Medical School, Braunschweig, 38106, Germany

Roles
Co-Author, Investigation, Writing – Review & Editing
0000-0002-3743-5388

Thomas M. Deserno

PLRI Institute for Medical Informatics of TU Braunschweig and Hannover Medical School, Braunschweig, 38106, Germany

Roles
Co-Author, Investigation, Writing – Review & Editing

Marta Almada

Ucibio Requimte, Faculty of Pharmacy University of Porto. Porto4Ageing, Porto, 4050-313, Portugal

Roles
Co-Author, Investigation, Validation, Writing – Review & Editing
0000-0001-6575-1698

Elisio Costa

Ucibio Requimte, Faculty of Pharmacy University of Porto. Porto4Ageing, Porto, 4050-313, Portugal

Roles
Co-Author, Investigation, Validation, Writing – Review & Editing
0000-0003-1158-1480

Catherine Chronaki

HL7 Europe Foundation, Brussels, 1000, Belgium

Roles
Co-Author, Investigation, Writing – Review & Editing
0000-0001-6638-8448

Giorgio Cangioli

HL7 Europe Foundation, Brussels, 1000, Belgium

Roles
Co-Author, Investigation, Writing – Review & Editing

Ronald Cornet

Amsterdam UMC, University of Amsterdam, Medical Informatics, Amsterdam Public Health, Amsterdam, 1105AZ, The Netherlands

Roles
Co-Author, Investigation, Writing – Review & Editing
0000-0002-1704-5980

Beatriz Poblador-Plou

EpiChron Research Group, Aragon Health Sciences Institute (IACS), IIS Aragón, Miguel Servet University Hospital, Zaragoza, 50009, Spain

Roles
Co-Author, Investigation, Validation, Writing – Review & Editing
0000-0002-5119-5093

Jonás Carmona-Pírez

EpiChron Research Group, Aragon Health Sciences Institute (IACS), IIS Aragón, Miguel Servet University Hospital, Zaragoza, 50009, Spain

Roles
Co-Author, Investigation, Validation, Writing – Review & Editing
0000-0002-6268-8803

Antonio Gimeno-Miguel

EpiChron Research Group, Aragon Health Sciences Institute (IACS), IIS Aragón, Miguel Servet University Hospital, Zaragoza, 50009, Spain

Roles
Co-Author, Investigation, Validation, Writing – Review & Editing

Antonio Poncel-Falcó

EpiChron Research Group, Aragon Health Sciences Institute (IACS), IIS Aragón, Aragon Health Service, Zaragoza, 50009, Spain

Roles
Co-Author, Investigation, Validation, Writing – Review & Editing

Alexandra Prados-Torres

EpiChron Research Group, Aragon Health Sciences Institute (IACS), IIS Aragón, Miguel Servet University Hospital, Zaragoza, 50009, Spain

Roles
Co-Author, Investigation, Validation, Writing – Review & Editing

Tomi Kovacevic

Medical Faculty University of Novi Sad, Novi Sad, 21000, Serbia

Institute for Pulmonary Diseases of Vojvodina, Sremska Kamenica, 21204, Serbia

Roles
Co-Author, Investigation, Validation, Writing – Review & Editing

Bojan Zaric

Medical Faculty University of Novi Sad, Novi Sad, 21000, Serbia

Institute for Pulmonary Diseases of Vojvodina, Sremska Kamenica, 21204, Serbia

Roles
Co-Author, Investigation, Validation
0000-0003-3215-8390

Darijo Bokan

Institute for Pulmonary Diseases of Vojvodina, Sremska Kamenica, 21204, Serbia

Roles
Co-Author, Investigation, Validation, Writing – Review & Editing

Sanja Hromis

Medical Faculty University of Novi Sad, Novi Sad, 21000, Serbia

Institute for Pulmonary Diseases of Vojvodina, Sremska Kamenica, 21204, Serbia

Roles
Co-Author, Investigation, Validation, Writing – Review & Editing

Jelena Djekic Malbasa

Medical Faculty University of Novi Sad, Novi Sad, 21000, Serbia

Institute for Pulmonary Diseases of Vojvodina, Sremska Kamenica, 21204, Serbia

Roles
Co-Author, Investigation, Validation, Writing – Review & Editing

Carlos Rapallo Fernández

J&A Garrigues, S.L.P., Seville, 41013, Spain

Roles
Co-Author, Conceptualization, Investigation, Writing – Review & Editing

Teresa Velázquez Fernández

J&A Garrigues, S.L.P., Seville, 41013, Spain

Roles
Co-Author, Conceptualization, Investigation, Writing – Review & Editing

Jessica Rochat

University of Geneva and University hospitals of Geneva, Geneva, 1211, Switzerland

Roles
Co-Author, Investigation, Validation, Writing – Review & Editing

Christophe Gaudet-Blavignac

University of Geneva and University hospitals of Geneva, Geneva, 1211, Switzerland

Roles
Co-Author, Investigation, Validation, Writing – Review & Editing

Christian Lovis

University of Geneva and University hospitals of Geneva, Geneva, 1211, Switzerland

Roles
Co-Author, Investigation, Validation, Writing – Review & Editing
0000-0002-2681-8076

Patrick Weber

Nice Computing SA Le Mont-sur-Lausanne, Le Mont-sur-Lausanne, 1052, Switzerland

Roles
Co-Author, Investigation, Writing – Review & Editing

Miriam Quintero

Atos Research and Innovation - ARI. Atos IT., Madrid, 28037, Spain

Atos Research and Innovation - ARI. Atos Spain., Madrid, 28037, Spain

Roles
Co-Author, Investigation, Software, Writing – Review & Editing

Manuel M. Perez-Perez

Atos Research and Innovation - ARI. Atos IT., Madrid, 28037, Spain

Atos Research and Innovation - ARI. Atos Spain., Madrid, 28037, Spain

Roles
Co-Author, Investigation, Writing – Review & Editing

Kevin Ashley

Digital Curation Centre, University of Edinburgh, Argyle House, Edinburgh, EH3 9DR, UK

Roles
Co-Author, Writing – Review & Editing
0000-0001-7546-5978

Laurence Horton

Digital Curation Centre, University of Glasgow, Glasgow, G12 8QQ, UK

Roles
Co-Author, Writing – Review & Editing
0000-0003-2742-6434

Carlos Luis Parra Calderón

Group of Research and Innovation in Biomedical Informatics, Biomedical Engineering and Health Economy, Institute of Biomedicine of Seville, IBiS / Virgen del Rocío University Hospital / CSIC / University of Seville, Seville, 41013, Spain

Roles
Co-Author, Conceptualization, Investigation, Project Administration, Supervision, Writing – Review & Editing

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