FAIR – FAIR data in Health Research Performing Organizations (HRPOs)

Chair:

Celia Alvarez-Romero (ORCID 0000-0001-8647-9515), Computational Health Informatics Group at the Virgen del Rocío University Hospital – Institute of Biomedicine of Seville, Seville, 41013, Spain.

Co-Chair:

Matthias Löbe (ORCID 0000-0002-2344-0426), Institute for Medical Informatics (IMISE), University of Leipzig, Leipzig, 04107, Germany.

Main Objectives:

The EFMI WG on FAIR data was founded in 2022. It is a place for people interested in the scientific research related to the FAIR principles [1], more specifically:

To promote FAIR data in Health Research Performing Organizations (HRPOs) promoting tools, processes (e.g. [2]), and standards to raise awareness and advance education on FAIR in the EFMI community.
Develop an HRPO maturity model for the adoption of the FAIR principles that can be adopted as an accreditation model for HRPOs, in line with the RDA FAIR data maturity model [3].

[1] Wilkinson, M. D., et al. (2016). The FAIR Guiding Principles for scientific data management and stewardship. Scientific data, 3, 160018. https://doi.org/10.1038/sdata.2016.18

[2] Sinaci, A. A., et al. (2020). From Raw Data to FAIR Data: The FAIRification Workflow for Health Research. Methods of information in medicine, 59(S 01), e21–e32. https://doi.org/10.1055/s-0040-1713684.

[3] RDA FAIR Data Maturity Model Working Group. (2020). FAIR Data Maturity Model: specification and guidelines (1.0). Research Data Alliance. https://doi.org/10.15497/rda00050

Relevant Activities:

Workshop: Martinez Garcia A, Löbe M, Draeger C, Perbix M. How to make health data FAIR: Using the NFDI4Health and FAIR4Health research data infrastructures – Introduction and greetings from the EFMI WG FAIR Data. DMEA-Satellitenveranstaltung von GMDS und BVMI. April 2022.
Workshop: Parra-Calderón CL, Tachinardi U, Bahroos N, Solomonides A, Saunders G, Giacomini M, Martínez-García A, Chronaki C. A coordinated US-European FAIR Health Research Data policy based on lessons learned during the Covid-19 pandemic. 32nd Medical Informatics Europe conference. May 2022.
Poster: Martinez-Garcia A, Löbe M, Alvarez-Romero C, Chronaki C, Winter A, Cangioli G, Parra-Calderón CL. A new EFMI working group on FAIR data in Health Research Performing Organizations. Research Data Alliance Virtual Plenary 19. June 2022.
Oral communication: Löbe M, Perbix M, Stäubert S, Sinaci AA, Gencturk M, Quintero M, Martinez-Garcia A, Alvarez-Romero C, Parra-Calderon CL, Winter A. A Formal Model for the FAIR4Health Information Architecture. 20th International Conference on Informatics, Management, and Technology in Healthcare. July 2022.
Workshop: Matthias Löbe, Raphael W. Majeed, Mark Rainer Stöhr, Abishaa Vengadeswaran, Dennis Kadioglu, Celia Alvarez-Romero, Carlos Luis Parra-Calderón, Alfred Winter. FAIR Data Dictionaries – Towards a Formal Model for Semantic Artifacts. 33rd Medical Informatics Europe conference. May 2023.
Workshop: Jaime Delgado, Mauro Giacomini, Celia Alvarez-Romero, Carlos Luis Parra-Calderón. 1st Joint Workshop EFMI WGs THI – FAIR – SSE: Secure and standardized integration of clinical and genomic information following FAIR principles and the use of AI tools. 33rd Medical Informatics Europe conference. May 2023.
Workshop: Celia Alvarez-Romero, Matthias Löbe, Catherine Chronaki, Giorgio Cangioli, Carlos Luis Parra-Calderón. Discussing FHIR implementations with regard to the FAIR data principles. EFMI Special Topic Conference 2023. October 2023.