Helping the Consumers and Producers of Standards,Repositories and Policies to Enable FAIR Data

Thousands of community-developed(meta)data guidelines,models,ontologies,schemas and formats have been created and implemented by several thousand data repositories and knowledge-bases,across all disciplines.These resources are necessary to meet government,funder and publisher expectations of greater transparency and access to and preservation of data related to research publications.This obligates researchers to ensure their data is FAIR,share their data using the appropriate standards,store their data in sustainable and community-adopted repositories,and to conform to funder and publisher data policies.FAIR data sharing also plays a key role in enabling researchers to evaluate,re-analyse and reproduce each other’s work.We can map the landscape of relationships between community-adopted standards and repositories,and the journal publisher and funder data policies that recommend their use.In this paper,we show how the work of the GO-FAIR FAIR Standards,Repositories and Policies(StRePo)Implementation Network serves as a central integration and cross-fertilisation point for the reuse of FAIR standards,repositories and data policies in general.Pivotal to this effort,the FAIRsharing,an endorsed flagship resource of the Research Data Alliance that maps the landscape of relationships between community-adopted standards and repositories,and the journal publisher and funder data policies that recommend their use.Lastly,we highlight a number of activities around FAIR tools,services and educational efforts to raise awareness and encourage participation.

Distributed Analytics on Sensitive Medical Data:The Personal Health Train

In recent years,as newer technologies have evolved around the healthcare ecosystem,more and more data have been generated.Advanced analytics could power the data collected from numerous sources,both from healthcare institutions,or generated by individuals themselves via apps and devices,and lead to innovations in treatment and diagnosis of diseases;improve the care given to the patient;and empower citizens to participate in the decision-making process regarding their own health and well-being.However,the sensitive nature of the health data prohibits healthcare organizations from sharing the data.The Personal Health Train(PHT)is a novel approach,aiming to establish a distributed data analytics infrastructure enabling the(re)use of distributed healthcare data,while data owners stay in control of their own data.The main principle of the PHT is that data remain in their original location,and analytical tasks visit data sources and execute the tasks.The PHT provides a distributed,flexible approach to use data in a network of participants,incorporating the FAIR principles.It facilitates the responsible use of sensitive and/or personal data by adopting international principles and regulations.This paper presents the concepts and main components of the PHT and demonstrates how it complies with FAIR principles.