In order to support and accelerate the research, data should be shared and disseminated, but at the same time the privacy right of the subjects should be safeguarded, considering data protection obligations.
Additional requirements have been introduced by the European General Data Protection Regulation (GDPR), that came into force in May 2018.
FAIRification principles, making data exchange Feasible, Accessible, Interoperable and Reusable are recommended to help the process!
Annalisa Landi, researcher of the Gianni Benzi Foundation, wrote her master thesis on accessibility of health data during a traineeship at Leiden University Medical Centre (Netherlands) and reported this very interesting experience in the article “The “A” of FAIR – As Open as Possible, as Closed as Necessary” written in collaboration with Mark Thompson and Marco Ross from Leiden University Medical Centre, Ignasi Labastida from Learning and Research Resources Centre, Luiz Olavo Bonino da Silva Santos from GO FAIR International Support & Coordination Office, Viviana Giannuzzi and Fedele Bonifazi, from the Gianni Benzi Foundation.
She explains that to make data “as open as possible and as closed as necessary” there is the necessity to solve the issues related to the protection of personal data on which patients are very concerned! Only advanced knowledge and improved skill by dedicated professional could help in this effort!
This article is related to one of the main fields of interest of the Gianni Benzi Foundation that is actively involved in data science by leading many research activities based on several tools and skills.