Improving Health Research in EU through FAIR Data
The European Federation for Medical Informatics EFMI is part of a European project on the advanced use and sharing of data from health research
Taking part in a project financed by the European Commission to make effective the application of the FAIR principles and obtain a strong impact on health research and even on health care
FAIR4Health is a project funded by the H2020 Science with and for Society (SwafS-04- 2018) call for proposals. It is carried out by 17 partners from 11 different countries and lasts 36 months. FAIR4Health, as proposed by this call, promotes the application of FAIR principles in data derived from publicly funded health research initiatives, so that they can be shared and reused within the European Union (EU) health research community, defining an effective EU-wide strategy for the use of FAIR in Health.
Applying FAIR principles to make research data Findable, Accessible, Interoperable and Reusable, and from a responsible approach, research and health care data (based on Digital Health Records) will be shared and reused in a secure, controlled ecosystem, in accordance with the legal and ethical framework. FAIR4Helath (https://www.fair4health.eu/) is the first proposal to transfer this initiative to clinical research in Europe, and is expected to have a strong impact on research results and on health and social care:
- Accelerating scientific discovery in the most relevant domain for humanity as it is Human Health.
- Improving the strength and quality of the scientific evidence provided by members of the FAIR4Health community and increasing its capacity for reproducibility by opening up the community to society.
- Providing innovative Digital Health services that enable the fluid application of new evidence obtained in clinical practice, specifically in the management of complex chronic patients.
The FAIR4Health consortium holds a General Assembly every 6 months. The last one was held virtually on September 15 and 16 and coordinated by the Andalusian Health Service (Spain). The next one will be in March 2021 with the aim of ensuring the monitoring of the achievement of the objectives through technical and scientific meetings of all the tasks included in the work plan.
Improving Health Research in EU through FAIR Data
Besides, the General Assemblies promote the correct and
efficient coordination between the different partners of the FAIR4Health consortium, led by the Andalusian Health Service (Spain), and made up of the following partners: Instituto Aragonés de Ciencias de la Salud (Spain), Universidad Carlos III de Madrid (Spain), Atos Spain SA (Spain), University for Health Sciences, Medical Informatics and Technology (Austria), HL7 Foundation (Belgium), Institut für Medizinische Informatik, Statistik und Epidemiologie - Universität Leipzig KöR (Germany), Academic Medical Center of University of Amsterdam (Netherlands), Université de Genève (Switzerland), Peter L. Reichertz Institute for Medical Informatics, University of Braunschweig (Germany), Università Cattolica del Sacro Cuore (Italy), European Federation of Medical Informatics (Switzerland), Digital Curation Centre from University of Edinburgh (United Kingdom), Garrigues (Spain), Software Research and Development Consultancy (Turkey), University of Porto (Portugal), and the Institute of Pulmonary Diseases of Vojvodine (Serbia).
One of the most important issues included is the formation and training of the researchers during a demonstration of the functioning of the tools developed in the project and which will be soon used in the validation and clinical demonstration of the use cases designed in the project. At this stage, the FAIR4Health platform development and deployment is finishing and several tests are being carried out in the FAIR4Health agents. The two pathfinder case studies, which have been designed by the clinical partners and approved by each regional Ethics Committee, have already been designed and described in the clinical protocols:
- Identification of multimorbidity patterns and correlation of polypharmacy in the risk of mortality in the elderly.
- Early prediction service of the risk of readmission in 30 days in patients with Chronic obstructive pulmonary disease (COPD).
Finally, in the next steps of the FAIR4Health progress, to validate the FAIR4Health platform and demonstrate the potential impact on health outcomes, two pathfinder case studies prototypes will be performed in FAIR4Health agents that are located at the data owners’ facilities (Italy, Portugal, Serbia, Spain and Switzerland).
FAIR4Health is funded by the European Union's Horizon 2020 research and innovation programme under Grant Agreement number 824666.
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