Publication: [A New Paradigm in Health Research: FAIR Data (Findable, Accessible, Interoperable, Reusable)].
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Identifiers
Date
2020-12-02
Authors
Almada, Marta
Midão, Luis
Portela, Diana
Dias, Ines
Nuñez-Benjumea, Francisco J
Parra-Calderon, Carlos L
Costa, Elisio
Advisors
Journal Title
Journal ISSN
Volume Title
Publisher
Ordem dos Medicos
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.
Description
MeSH Terms
Access to Information
Biomedical Research
Data Management
Databases, Factual
Health Information Interoperability
Humans
Biomedical Research
Data Management
Databases, Factual
Health Information Interoperability
Humans
DeCS Terms
Salud
Telemedicina
Eficiencia
Factores protectores
Medicina de precisión
Atención a la salud
Investigación
Tecnología
Telemedicina
Eficiencia
Factores protectores
Medicina de precisión
Atención a la salud
Investigación
Tecnología
CIE Terms
Keywords
Databases, Factual, Health Information Management, Health Information Systems, Information Dissemination, Metadata, Research
Citation
Almada M, Midão L, Portela D, Dias I, Núñez-Benjumea FJ, Parra-Calderón CL, et al. Um Novo Paradigma em Investigação em Saúde: Dados FAIR (Localizáveis, Acessíveis, Interoperáveis, Reutilizáveis) [A New Paradigm in Health Research: FAIR Data (Findable, Accessible, Interoperable, Reusable)]. Acta Med Port. 2020 Dec 2;33(12):828-834. Portuguese.