Project

FAIR4Health | Improving Health Research in EU through FAIR Data

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Uploaded by RRI Tools on 24 April 2019

English

TIME

From 01/12/2018 to 30/12/2021

Objectives

The overall objective of FAIR4Health is to facilitate and encourage the EU health research community to FAIRify, share and reuse their datasets derived from publicly funded research initiatives.

  • Specific Objective 1. To design and implement an effective outreach strategy at EU level based on trust building and shared benefit
  • Specific Objective 2. To produce a set of guidelines to inform a number of Research Data Alliance recommendations in order to set the foundations for a FAIR data certification roadmap to guarantee high quality of data
  • Specific Objective 3. To develop and validate intuitive, user-centered technological tools to enable the translation from raw (meta)data to FAIR (meta)data and support the FAIRification workflow, i.e., the FAIR4Health Platform and Agents
  • Specific Objective 4. To demonstrate the potential impact in terms of health outcomes and health research that the implementation of such FAIR data strategy will have through the development and validation of 2 pathfinder case studies.

 

You can download some slides presenting the project from here

 

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The project has launched several surveys:

1. Open Survey on Boosting Citizen Science in Health Research

The purpose of the survey is to gather feedback from citizens about the suitability of several Public Engagement (PE) strategies to be applied for boosting citizen science in EU health research. 

The results of this survey will be used as input for further discussion in a focus group between key experts in the field and will also be included in the report “Guidelines for implementing FAIR open data policy in health research” as part of the work developed within the project.

2. Open Survey on cultural barriers using FAIR data for health research

The purpose of this survey is to gather opinions and attitudes about sharing of health data.

3. Open Survey on ethical implications of reusing FAIR data for health research

The purpose of the survey is to gather feedback from all involved stakeholders in health research regarding their perceived importance of putting in place mechanisms to guarantee the compliance with the ethical considerations listed below. 

The results of this survey will be used as input for further discussion in a focus group between key experts in the field and will be included in the report “Guidelines for implementing FAIR open data policy in health research” as part of the work developed within the FAIR4Health project.

FAIR4Health is coordinated by Prof. Carlos L. Parra-Calderón, head of the Technological Innovation Unit at Virgen del Rocio University Hospital as part of the Andalusian Health Service in Spain.

The consortium accounts for 17 partners from 11 EU and non-EU countries. There is a strong representation from both southern and central Europe, and it includes non-EU countries such as Switzerland, Serbia and Turkey.

FAIR4Health brings together expertise from different domains (health research, data managers, medical informatics, software developers, standards and lawyers) all of them key stakeholders to address the challenges posed by the project.

  • The SAS’s Virgen del Rocío University Hospital (VRUH), Spain
  • Instituto Aragonés de Ciencias de la Salud / Aragon Health Sciences Institute (IACS), Spain
  • The Universidad Carlos III de Madrid (UC3M), Spain
  • Atos, Spain
  • UMIT - Private University for Health Sciences, Medical Informatics and Technology, Austria
  • Health Level Seven International (HL7) 
  • Institute for Medical Informatics, Statistics and Epidemiology (IMISE), Medical Faculty of the University Leipzig, Germany
  • The Academic Medical Centre Amsterdam (AMC), The Netherlands
  • The University of Geneva (UNIGE), Switzerland
  • The Peter L. Reichertz Institute of Medical Informatics (PLRI), Germany
  • The Università Cattolica del Sacro Cuore (UCSC), Italy
  • The European Federation for Medical Informatics Association (EFMI)
  • The Digital Curation Centre, University of Edinburgh, UK
  • Garrigues
  • Software Research and Development Consultancy A. S. (SRDC), Turkey
  • University of Porto (UPORTO), Portugal
  • The Institute for Pulmonary Diseases of Vojvodina (IPBV), Serbia

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