Date: 17 Feburary 2021
Time: 4:00 PM GMT / 5:00 PM CET
Materials: Slides - Making cohort data FAIR
Location: Online
Contact: Mamana Mbiyavanga & Marta Lloret Llinares
Overview
Cohort studies, which recruit groups of individuals who share common characteristics and follow them over a period of time, are a robust and essential method in biomedical research for understanding the links between risk factors and diseases. Through questionnaires, medical assessments, and other interactions, voluminous and complex data are collected about the study participants. While cohort studies present a treasure trove of data, the data is often not FAIR (findable, accessible, interoperable and reusable). First, due to the sensitive and private nature of medical information, cohort data are often access controlled. Due to the lack of information about the studies (metadata), often one needs to dig deep to know what data is available in a cohort study. Therefore, many cohort datasets suffer from the findable and accessible issues. Second, often data collection is performed with instruments and data specifications tailored to the study. As a result, combining data across cohorts, even ones with similar characteristics, is difficult, making interoperability and reusability a challenge. In this presentation, we will explore several informatics techniques, such as the use of ontology, to make cohort data more FAIR. We will also consider the implications of making cohort data more open and the ethical and governance issues associated with open science benefit sharing.
The “How FAIR are you” webinar series and hackathon aim at increasing and facilitating the uptake of FAIR approaches into software, training materials and cohort data, to facilitate responsible and ethical data and resource sharing and implementation of federated applications for data analysis.
The CINECA webinar series aims to discuss ways to address common challenges and share best practices in the field of cohort data analysis, as well as distribute CINECA project results. All CINECA webinars include an audience Q&A session during which attendees can ask questions and make suggestions. Please note that all webinars are recorded and available for posterior viewing.
About the speaker
Dr. William Hsiao joined the Faculty of Health Sciences at Simon Fraser University as an associate professor in September 2020. He is also an affiliated scientist at the BC Centre for Disease Control Public Health Laboratory (BCCDC PHL) and at Canada’s Michael Smith Genome Sciences Centre, and a genomic consultant with the BC Ministry of Agriculture Animal Health Centre.
Prior to joining FHS, Dr. Hsiao was the chief bioinformatician and a senior scientist at the BCCDC PHL for 8 years and a clinical associate professor at the University of British Columbia. Dr. Hsiao obtained his PhD in the Department of Molecular Biology and Biochemistry at Simon Fraser University followed by a postdoctoral fellowship at the Institute for Genome Sciences at University of Maryland School of Medicine. During his formal training, his research focused on microbial genomics and metagenomics. During his time at the BCCDC PHL, he incorporated data science and knowledge engineering into his research and developed expertise in public health data sharing, integration, and harmonization. With experience conducting and applying genomics and data science research both in academia and in government laboratories (public health and animal health), Dr. Hsiao has developed a special perspective on integrating basic and applied research to improve our public health system.
About CINECA
The CINECA (Common Infrastructure for National Cohorts in Europe, Canada, and Africa) project aims to develop a federated cloud enabled infrastructure to make population scale genomic and biomolecular data accessible across international borders, to accelerate research, and improve the health of individuals across continents. CINECA will leverage international investment in human cohort studies from Europe, Canada, and Africa to deliver a paradigm shift of federated research and clinical applications. The CINECA consortium will create one of the largest cross-continental implementations of human genetic and phenotypic data federation and interoperability with a focus on common (complex) disease, one of the world’s most significant health burdens. CINECA has assembled a virtual cohort of 1.4M individuals from population, longitudinal and disease studies. Federated analyses will deliver new scientific knowledge, harmonisation strategies and the necessary ELSI framework supporting data exchange across legal jurisdictions enabling federated analyses in the cloud. CINECA will provide a template to achieve virtual longitudinal and disease specific cohorts of millions of samples, to advance benefits to patients. It will leverage partner membership of standards and infrastructures like the Global Alliance for Global Health, BBMRI, ELIXIR, and EOSC driving the state of the art in standards development, technical implementation and FAIR data.