User scenarios to promote the use of FAIR data on health research
Marta Almada - UCIBIO, REQUIMTE, Porto4Ageing, Faculty of Pharmacy University of Porto, Diana Portela - ACES Feira Arouca, Luis Midao - UCIBIO, REQUIMTE, Porto4Ageing, Faculty of Pharmacy University of Porto, Sinaci - SRDC Software Research, Development and Consultancy Corp, Núñez-Benjumea, Parra-Calderón - Group of Research and Innovation in Biomedical Informatics,University of Seville and Elisio Costa - UCIBIO, REQUIMTE, Porto4Ageing, Faculty of Pharmacy University of Porto
Abstract:
Over last years, policies and efforts have been ongoing to encourage the share/reuse of data in a different research disciplines. Recently, an urgent need to FAIRify data from health research has emerged. In this regard, it is important to provide principles/guidelines to improve the findability, accessibility, interoperability, and reuse of digital assets. FAIRification of health research data will enable the re-use/share of existing biomedical data to improve research into personalised care, preventive medicine, and value-based healthcare. Nevertheless, this FAIRification process brings novel challenges, such as the use of personal and sensitive data, and currently, there is a lack of knowledge among the use of FAIR data on health. In parallel, the digital transformation of health/care in the Digital Single Market aims to empower citizens, to generate added-value for innovative companies and provide wider suggestions to stakeholders on the path towards optimal use of scientific data.
In this work, we aimed to demonstrate the potential impact of FAIR data strategy on health outcomes, innovation/research, and on boosting citizen science. For this, we will present four user scenarios and provide evidence-based representations of the benefits of the use FAIR on health. This approach will enable the design of representative and specific user scenarios with related needs to different segment of populations, eg. a start-up, citizen, a health unit/hospital and a research centre.
These user scenarios will explore specific aspects of healthcare products/services, or needs, and ultimately generate innovative services based on sharing/reuse of FAIR datasets. In overall, this work will allow us to identify technical hurdles and overcome challenges that will emerge from the FAIRification process, but foremost to show the impact of using FAIR data on health research, to not only researchers and stakeholders-representing academia, industry and funding agencies, but also citizens.