User journeys in cross-European secondary use of health data:
insights ahead of the European Health Data Space

J 2025

User journeys in cross-European secondary use of health data: insights ahead of the European Health Data Space

FORSTER, Rachel B; Eva GARCIA ALVAREZ; Adrian G ZUCCO; Enrique BERNAL-DELGADO; Gayo DIALLO et al.

Základní údaje

Originální název

User journeys in cross-European secondary use of health data: insights ahead of the European Health Data Space

Autoři

Vydání

EUROPEAN JOURNAL OF PUBLIC HEALTH, OXFORD UNIV PRESS, 2025, 1101-1262

Další údaje

Jazyk

angličtina

Typ výsledku

Článek v odborném periodiku

Stát vydavatele

Velká Británie a Severní Irsko

Utajení

není předmětem státního či obchodního tajemství

Odkazy

URL

Impakt faktor

Impact factor: 3.900 v roce 2024

Označené pro přenos do RIV

Organizační jednotka

Ústav výpočetní techniky

DOI

https://doi.org/10.1093/eurpub/ckaf096

Klíčová slova anglicky

metadata european continental ancestry group collaboration health care systems narrative discourse

Příznaky

Mezinárodní význam, Recenzováno

Změněno: 14. 9. 2025 09:45, doc. RNDr. Petr Holub, Ph.D.

Anotace

V originále

The European Health Data Space (EHDS) regulation aims to facilitate cross-border sharing of health data across Europe. However, practical challenges related to data access, interoperability, quality, and interpretive competence remain, particularly when working with health systems across countries. This study aimed to evaluate and report the user journey of researchers accessing and utilizing health data across four European countries for secondary research purposes prior to implementation of EHDS. We conducted a narrative reflection of individual and collective experiences on key aspects of the user journey—discovery, access, use, and finalization. Data were gathered from various structured and unstructured sources, including an online log, prospective questionnaires, regular meetings, and interviews. Researchers faced challenges at different steps of the user journey, which included lack of data quality in national metadata catalogues (discovery stage). Differences in national regulations led to inconsistent timelines for gaining access to data (access stage), with approval times ranging from a few months to over a year. At the use stage, researchers experienced challenges in harmonizing health data due to variations in coding practices and data quality. Issues related to computational capacity caused further delays. Substantial challenges must be addressed for EHDS to succeed. Establishing knowledge hubs, fostering collaborations, and streamlining access processes are essential. Close collaboration with experts will likely be essential for an effective user journey. This analysis underscores the importance of collaboration, analytical reproducibility, and clear documentation to ensure the success and timely delivery of cross-border projects.

Citovat

FORSTER, Rachel B; Eva GARCIA ALVAREZ; Adrian G ZUCCO; Enrique BERNAL-DELGADO; Gayo DIALLO; Francisco ESTUPIÑÁN-ROMERO; Andrea GANNA; Madeleine GORMAN-ASAL; Christina HILMARSEN; Petr HOLUB; Klaus HOEYER; Arti RAWAT; Naja H ROD; Anna-Leena VUORINEN a Tibor V VARGA. User journeys in cross-European secondary use of health data: insights ahead of the European Health Data Space. EUROPEAN JOURNAL OF PUBLIC HEALTH. OXFORD UNIV PRESS, 2025, roč. 35, Supplement_3, s. 18-24. ISSN 1101-1262. Dostupné z: https://doi.org/10.1093/eurpub/ckaf096.

@article{2517958,
   author = {Forster, Rachel B and Garcia Alvarez, Eva and Zucco, Adrian G and BernalandDelgado, Enrique and Diallo, Gayo and EstupiñánandRomero, Francisco and Ganna, Andrea and GormanandAsal, Madeleine and Hilmarsen, Christina and Holub, Petr and Hoeyer, Klaus and Rawat, Arti and Rod, Naja H and Vuorinen, AnnaandLeena and Varga, Tibor V},
   article_number = {Supplement_3},
   doi = {https://doi.org/10.1093/eurpub/ckaf096},
   keywords = {metadata european continental ancestry group collaboration health care systems narrative discourse},
   language = {eng},
   issn = {1101-1262},
   journal = {EUROPEAN JOURNAL OF PUBLIC HEALTH},
   title = {User journeys in cross-European secondary use of health data: insights ahead of the European Health Data Space},
   url = {https://academic.oup.com/eurpub/article/35/Supplement_3/iii18/8250091},
   volume = {35},
   year = {2025}
}

TY  - JOUR
ID  - 2517958
AU  - Forster, Rachel B - Garcia Alvarez, Eva - Zucco, Adrian G - Bernal-Delgado, Enrique - Diallo, Gayo - Estupiñán-Romero, Francisco - Ganna, Andrea - Gorman-Asal, Madeleine - Hilmarsen, Christina - Holub, Petr - Hoeyer, Klaus - Rawat, Arti - Rod, Naja H - Vuorinen, Anna-Leena - Varga, Tibor V
PY  - 2025
TI  - User journeys in cross-European secondary use of health data: insights ahead of the European Health Data Space
JF  - EUROPEAN JOURNAL OF PUBLIC HEALTH
VL  - 35
IS  - Supplement_3
SP  - 18-24
EP  - 18-24
PB  - OXFORD UNIV PRESS
SN  - 11011262
KW  - metadata european continental ancestry group collaboration health care systems narrative discourse
UR  - https://academic.oup.com/eurpub/article/35/Supplement_3/iii18/8250091
N2  - The European Health Data Space (EHDS) regulation aims to facilitate cross-border sharing of health data across Europe. However, practical challenges related to data access, interoperability, quality, and interpretive competence remain, particularly when working with health systems across countries. This study aimed to evaluate and report the user journey of researchers accessing and utilizing health data across four European countries for secondary research purposes prior to implementation of EHDS. We conducted a narrative reflection of individual and collective experiences on key aspects of the user journey—discovery, access, use, and finalization. Data were gathered from various structured and unstructured sources, including an online log, prospective questionnaires, regular meetings, and interviews. Researchers faced challenges at different steps of the user journey, which included lack of data quality in national metadata catalogues (discovery stage). Differences in national regulations led to inconsistent timelines for gaining access to data (access stage), with approval times ranging from a few months to over a year. At the use stage, researchers experienced challenges in harmonizing health data due to variations in coding practices and data quality. Issues related to computational capacity caused further delays. Substantial challenges must be addressed for EHDS to succeed. Establishing knowledge hubs, fostering collaborations, and streamlining access processes are essential. Close collaboration with experts will likely be essential for an effective user journey. This analysis underscores the importance of collaboration, analytical reproducibility, and clear documentation to ensure the success and timely delivery of cross-border projects.
ER  -

FORSTER, Rachel B; Eva GARCIA ALVAREZ; Adrian G ZUCCO; Enrique BERNAL-DELGADO; Gayo DIALLO; Francisco ESTUPIÑÁN-ROMERO; Andrea GANNA; Madeleine GORMAN-ASAL; Christina HILMARSEN; Petr HOLUB; Klaus HOEYER; Arti RAWAT; Naja H ROD; Anna-Leena VUORINEN a Tibor V VARGA. User journeys in cross-European secondary use of health data: insights ahead of the European Health Data Space. \textit{EUROPEAN JOURNAL OF PUBLIC HEALTH}. OXFORD UNIV PRESS, 2025, roč.~35, Supplement\_{}3, s.~18-24. ISSN~1101-1262. Dostupné z: https://doi.org/10.1093/eurpub/ckaf096.

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