Date: 21 January 2021
Time: 3:00 PM GMT / 4:00 PM CET
Materials: Slides - Open science through fair health data networks dream or reality?
Location: Online
Contact: Mamana Mbiyavanga
Overview
CINECA starts a "How FAIR are you" webinar series with a presentation by Kees van Bochove, founder of The Hyve.
Since the FAIR data principles were published in 2016, many organizations including science funders and governments have adopted these principles to promote and foster true open science collaborations. However, to define a vision and create a video of a Personal Health Train that leverages worldwide FAIR health data in a federated manner is one step. To actually make this happen at scale and be able to show new scientific and medical insights for it is quite another!
In this webinar, we will dive into the basics of FAIR health data, but also take stock of the current situation in health data networks: after a year of frantic research and collaborations and many open datasets and hackathons on COVID-19, has the situation actually improved? Are we sharing health data on a global scale to improve medical practice, or is quality medical data still only accessible to researchers with the right credentials and deep pockets?
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
Kees van Bochove is founder of The Hyve, a company dedicated to the support and facilitation of open source, open standards and open data in biomedical informatics. He studied Computer Science at University of Utrecht and Bioinformatics at VU University Amsterdam, for which he did his research project on lipoprotein metabolism at TNO Quality of Life in Zeist and the Jean Mayer USDA Human Nutrition Research Center on Aging at Tufts University Boston.
Kees is active in many open source biomedical software development communities such as i2b2/tranSMART, cBioPortal, OHDSI, RADAR and GA4GH. Through his years of experience in open source software and standards development in biomedical informatics, Kees has gained a deep understanding of all aspects of collaborative open source development and open science, including open source community building and governance, software quality and sustainability requirements, sharing of data and compute workflows etc.
Kees is active in several precompetitive initiatives, under which several IMI and H2020 projects. He has been or is work package and task leader in projects such as IMI PIONEER, BigData@Heart, EHDEN, FAIRplus, GO-FAIR initiatives, and he has served on the Board of Directors and Advisory Boards of a.o. Pistoia Alliance, DTL, tranSMART Foundation, Movember Foundation and Digital Biomarkers. He has been involved with the FAIR movement since the initial Lorentz workshop in 2014, and was one of the initiators of the FAIR implementation working group in the Pistoia Alliance, hosting a formatory Pistoia workshop on the implementation of the FAIR principles in Pharma R&D at The Hyve in 2018. He actively contributes to international dialogue about the application of biomedical data standards such as OMOP, FHIR, openEHR, GA4GH etc.
Today, Kees’ main expertise and engagements are as Principal Consultant, advising pharma companies, academic hospitals as well as patient and health data networks on their FAIR Data Strategy and advising and leading implementation projects with teams from The Hyve. In this role, he has assisted several top 20 pharmaceutical companies build their R&D data strategy, hospital network CDOs and CIOs build translational medicine infrastructures, and national governments and programs such as the Dutch HealthRI, the Swiss Personalized Health Network, and the German Medical Informatics Initiative to build out their health data network infrastructures.
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.