A New Paradigm in Health Research: FAIR Data (Findable, Accessible, Interoperable, Reusable)

Authors

  • Marta Almada UCIBIO/REQUIMTE. Faculty of Pharmacy and Competences Centre on Active and Healthy Ageing (Porto4Ageing). University of Porto. Porto.
  • Luis Midão UCIBIO/REQUIMTE. Faculty of Pharmacy and Competences Centre on Active and Healthy Ageing (Porto4Ageing). University of Porto. Porto.
  • Diana Portela Agrupamentos de Centros de Saúde Entre Douro e Vouga I. Feira Arouca. Santa Maria da Feira. Centre for Health Technology and Services Research (CINTESIS). Faculty of Medicine. University of Porto. Porto.
  • Ines Dias UCIBIO/REQUIMTE. Faculty of Pharmacy and Competences Centre on Active and Healthy Ageing (Porto4Ageing). University of Porto. Porto.
  • Francisco J. Núñez-Benjumea Group of Research and Innovation in Biomedical Informatics, Biomedical Engineering and Health Economy. Institute of Biomedicine of Seville. IBiS / Virgen del Rocío University Hospital / CSIC / University of Seville. Seville. Spain.
  • Carlos L. Parra-Calderón Group of Research and Innovation in Biomedical Informatics, Biomedical Engineering and Health Economy. Institute of Biomedicine of Seville. IBiS / Virgen del Rocío University Hospital / CSIC / University of Seville. Seville. Spain.
  • Elísio Costa UCIBIO/REQUIMTE. Faculty of Pharmacy and Competences Centre on Active and Healthy Ageing (Porto4Ageing). University of Porto. Porto. Biochemistry Laboratory. Biological Sciences Department. Faculty of Pharmacy. University of Porto. Porto.

DOI:

https://doi.org/10.20344/amp.12910

Keywords:

Databases, Factual, Health Information Management, Health Information Systems, Information Dissemination, Metadata, Research

Abstract

The digital era, that we are living nowadays, is transforming health, health care models and services, and the role of society in this new reality. We currently have a large amount of stored health data, including clinical, biometric, and scientific research data. Nonetheless, its potential is not being fully exploited. It is essential to foster the sharing and reuse of this data not only in research but also towards the development of health technologies in order to improve health care efficiency, as well as products, services or digital health apps, to promote preventive and individualized medicine and to empower citizens in health literacy and self-management. In this sense, the FAIR concept has emerged, which implies that health data is findable, accessible, shared and reusable, facilitating interoperability between systems, ensuring the protection of personal and sensitive data. In this paper we review the FAIR concept, ‘FAIRification’ process, FAIR data versus open access data, ethical issues and the general data protection regulation, and digital health and citizen science.

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Published

2020-12-02

How to Cite

1.
Almada M, Midão L, Portela D, Dias I, Núñez-Benjumea FJ, Parra-Calderón CL, Costa E. A New Paradigm in Health Research: FAIR Data (Findable, Accessible, Interoperable, Reusable). Acta Med Port [Internet]. 2020 Dec. 2 [cited 2024 Jun. 24];33(12):828-34. Available from: https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/12910

Issue

Section

Review Articles