Almada Marta, Midão Luis, Portela Diana, Dias Ines, Núñez-Benjumea Francisco J, Parra-Calderón Carlos L, Costa Elísio
UCIBIO/REQUIMTE. Faculty of Pharmacy and Competences Centre on Active and Healthy Ageing (Porto4Ageing). University of Porto. Porto. Portugal.
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. Portugal.
Acta Med Port. 2020 Dec 2;33(12):828-834. doi: 10.20344/amp.12910.
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.
我们如今生活的数字时代正在改变健康、医疗模式与服务,以及社会在这一新现实中的角色。目前我们拥有大量存储的健康数据,包括临床、生物特征和科研数据。然而,其潜力尚未得到充分挖掘。不仅在研究中,而且在健康技术开发方面,促进这些数据的共享和再利用至关重要,目的是提高医疗效率,以及改进产品、服务或数字健康应用程序,以推动预防医学和个性化医疗,并增强公民的健康素养和自我管理能力。从这个意义上说,FAIR概念应运而生,这意味着健康数据是可查找、可访问、可共享和可再利用的,有助于系统之间的互操作性,确保个人和敏感数据得到保护。在本文中,我们将回顾FAIR概念、“FAIR化”过程、FAIR数据与开放获取数据、伦理问题和通用数据保护条例,以及数字健康和公民科学。