Applying the FAIR principles to data in a hospital: challenges and opportunities in a pandemic.

FAIR Hospital Ontologies Open science Patient data Research data management

Journal

Journal of biomedical semantics
ISSN: 2041-1480
Titre abrégé: J Biomed Semantics
Pays: England
ID NLM: 101531992

Informations de publication

Date de publication:
25 04 2022
Historique:
received: 27 08 2021
accepted: 19 02 2022
entrez: 26 4 2022
pubmed: 27 4 2022
medline: 28 4 2022
Statut: epublish

Résumé

The COVID-19 pandemic has challenged healthcare systems and research worldwide. Data is collected all over the world and needs to be integrated and made available to other researchers quickly. However, the various heterogeneous information systems that are used in hospitals can result in fragmentation of health data over multiple data 'silos' that are not interoperable for analysis. Consequently, clinical observations in hospitalised patients are not prepared to be reused efficiently and timely. There is a need to adapt the research data management in hospitals to make COVID-19 observational patient data machine actionable, i.e. more Findable, Accessible, Interoperable and Reusable (FAIR) for humans and machines. We therefore applied the FAIR principles in the hospital to make patient data more FAIR. In this paper, we present our FAIR approach to transform COVID-19 observational patient data collected in the hospital into machine actionable digital objects to answer medical doctors' research questions. With this objective, we conducted a coordinated FAIRification among stakeholders based on ontological models for data and metadata, and a FAIR based architecture that complements the existing data management. We applied FAIR Data Points for metadata exposure, turning investigational parameters into a FAIR dataset. We demonstrated that this dataset is machine actionable by means of three different computational activities: federated query of patient data along open existing knowledge sources across the world through the Semantic Web, implementing Web APIs for data query interoperability, and building applications on top of these FAIR patient data for FAIR data analytics in the hospital. Our work demonstrates that a FAIR research data management plan based on ontological models for data and metadata, open Science, Semantic Web technologies, and FAIR Data Points is providing data infrastructure in the hospital for machine actionable FAIR Digital Objects. This FAIR data is prepared to be reused for federated analysis, linkable to other FAIR data such as Linked Open Data, and reusable to develop software applications on top of them for hypothesis generation and knowledge discovery.

Sections du résumé

BACKGROUND
The COVID-19 pandemic has challenged healthcare systems and research worldwide. Data is collected all over the world and needs to be integrated and made available to other researchers quickly. However, the various heterogeneous information systems that are used in hospitals can result in fragmentation of health data over multiple data 'silos' that are not interoperable for analysis. Consequently, clinical observations in hospitalised patients are not prepared to be reused efficiently and timely. There is a need to adapt the research data management in hospitals to make COVID-19 observational patient data machine actionable, i.e. more Findable, Accessible, Interoperable and Reusable (FAIR) for humans and machines. We therefore applied the FAIR principles in the hospital to make patient data more FAIR.
RESULTS
In this paper, we present our FAIR approach to transform COVID-19 observational patient data collected in the hospital into machine actionable digital objects to answer medical doctors' research questions. With this objective, we conducted a coordinated FAIRification among stakeholders based on ontological models for data and metadata, and a FAIR based architecture that complements the existing data management. We applied FAIR Data Points for metadata exposure, turning investigational parameters into a FAIR dataset. We demonstrated that this dataset is machine actionable by means of three different computational activities: federated query of patient data along open existing knowledge sources across the world through the Semantic Web, implementing Web APIs for data query interoperability, and building applications on top of these FAIR patient data for FAIR data analytics in the hospital.
CONCLUSIONS
Our work demonstrates that a FAIR research data management plan based on ontological models for data and metadata, open Science, Semantic Web technologies, and FAIR Data Points is providing data infrastructure in the hospital for machine actionable FAIR Digital Objects. This FAIR data is prepared to be reused for federated analysis, linkable to other FAIR data such as Linked Open Data, and reusable to develop software applications on top of them for hypothesis generation and knowledge discovery.

Identifiants

pubmed: 35468846
doi: 10.1186/s13326-022-00263-7
pii: 10.1186/s13326-022-00263-7
pmc: PMC9036506
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

12

Subventions

Organisme : Horizon 2020
ID : 825575

Informations de copyright

© 2022. The Author(s).

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Auteurs

Núria Queralt-Rosinach (N)

Department of Human Genetics, Leiden University Medical Center, Leiden, The Netherlands.

Rajaram Kaliyaperumal (R)

Department of Human Genetics, Leiden University Medical Center, Leiden, The Netherlands.

César H Bernabé (CH)

Department of Human Genetics, Leiden University Medical Center, Leiden, The Netherlands.

Qinqin Long (Q)

Department of Human Genetics, Leiden University Medical Center, Leiden, The Netherlands.

Simone A Joosten (SA)

Department of Infectious Diseases, Leiden University Medical Center, Leiden, The Netherlands.

Henk Jan van der Wijk (HJ)

Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands.

Erik L A Flikkenschild (ELA)

Department of IT&DI, Leiden University Medical Center, Leiden, The Netherlands.

Kees Burger (K)

Department of Human Genetics, Leiden University Medical Center, Leiden, The Netherlands.

Annika Jacobsen (A)

Department of Human Genetics, Leiden University Medical Center, Leiden, The Netherlands.

Barend Mons (B)

Department of Human Genetics, Leiden University Medical Center, Leiden, The Netherlands.
GO FAIR Foundation, Leiden, The Netherlands.
CODATA, Paris, France.

Marco Roos (M)

Department of Human Genetics, Leiden University Medical Center, Leiden, The Netherlands. M.Roos@lumc.nl.

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