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

• Autor(a) principal: Almada, Marta
• Data de Publicação: 2020
• Outros Autores: Midão, Luis, Portela, Diana, Dias, Ines, Núñez-Benjumea, Francisco J., Parra-Calderón, Carlos L., Costa, Elísio
• Tipo de documento: Artigo
• Idioma: por
• Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
• Texto Completo: https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/12910
• topic: Databases; Factual; Health Information Management; Health Information Systems; Information Dissemination; Metadata; Research; Bases de Dados Factuais; Disseminação da Informação; Gestão da Informação em Saúde; Investigação; Metadados; Sistemas de Informação em Saúde

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.