Date:  1 October 2020

Time: 4:00 pm CEST

Materials: Slides Status update code of conduct: teaming up & talking about it

Speaker: Michaela Th. Mayrhofer, BBMRI-ERIC

Contact: Marta Lloret Llinares

Overview

The CINECA webinar series continues with a presentation by Dr. Michaela Th. Mayrhofer (BBMRI-ERIC) on Status Update Code of Conduct: Teaming up & Talking about it.

 Committed to the drafting of a Code of Conduct for the sector of health research according to Art. 40 GDPR, our initiative is advancing slowly but steadily. Throughout Europe, national jurisdictions differ to a great deal in their interpretations of the GDPR, especially in regard to its application in health research. This is due to some quite vague provisions (public interest, not incompatible clause) as wells as to numerous exemption/derogation clauses concerning the use of health data for research purposes, which encourage States to set up national rules – enhancing fragmentation. Notably, a Code of Conduct can help to bridge the harmonization gaps that may exist between Member States in their application of data protection law. On a practical level, a code is potentially a cost-effective method to achieve greater levels of consistency of protection as well as a mechanism to demonstrate compliance with the GDPR. By spring 2020, several hundred individuals representing around 90 organizations in the field of health research have indicated their interest and support for the Code of Conduct for Health Research. At this stage, this does not yet indicate an endorsement but means that they see a benefit in the development of such a code and are interested in partaking in the process. Additionally, several exchanges take place with national and sectoral codes in order to use synergies and finds ways for collaboration. This webinar is intended to inform you about the latest results.

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:

Michaela Th. Mayrhofer is a political scientist and historian by training. She was educated in Vienna, Louvain-la-Neuve, Essex and Paris. In 2010, she has earned her PhD from both the Ecole des Hautes Etudes en Sciences Sociales and the University of Vienna, which was shortlisted by the Austrian Society for Political Science for 'best thesis 2010'. Prior to her involvement in BBMRI-ERIC, she was investigator in several national and international research projects focusing on the politics of biotechnology and the life sciences, especially the governance of biobanks. Her academic career led to various positions at the Centre de Recherche Médecine, Sciences, Santé et Société, the University of Vienna, the Institute of Science, Technology and Society Studies at Alpen-Adria-Universität Klagenfurt/ Vienna/Graz, the Technical University of Vienna and the Medical University of Graz. Today, she serves as the Chief Policy and Coordination Officer of BBMRI-ERIC and coordinates the Code of Conduct for Health Research initiative.

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.

Date: Thursday 12 December 2019, 12:30 - 13:30 GMT

Materials: Slides H3ABioNet experiences in phenotype data harmonisation and standards development

Contact: Vera Matser

Overview

H3ABioNet supports the H3Africa Consortium in their research data collection and analysis efforts. This includes both genomic and phenotypic data. With the completion of data collection from some of the projects in H3Africa cycle 1 of funding it become clear midway that some data standardisation/harmonisation would be needed to facilitate meta-analyses of data especially with regards to the clinical data collected by the various studies. H3ABioNet working with the H3Africa Phenotype Harmonisation Working Group have developed an H3Africa Standard CRF which newer studies in cycle 2 of funding having taken up to use for their clinical data collection and we have also supported post data collection harmonisation effort for the H3Africa Cardiovascular Disease Working Group assisting with harmonising data across 6 different studies. We will be talking about experiences in both standards development in Africa and data harmonisation methods used.

About the speaker:

Katherine Johnston is currently co-chair of the H3ABioNet Health Informatics Work Package and H3Africa Phenotype Harmonisation Working Group, focused on data harmonisation efforts and building Phenotype Standards in the African context. She provides support to the H3Africa Consortium studies in phenotype data collection, harmonisation, software platforms and incorporation of ontologies. With a long-standing desire to play a role in advances in genetic research, Katherine moved from a position as Head Clinical Data Manager at AHRI, Durban and joined the Computational Biology Division at UCT, Cape Town as an H3ABioNet Software Developer. She completed an Honours degree in Computer Science and Economics and started her career working in Electronic Health Record systems development. Discovering a passion for helping medical professionals in the field of patient care by building them useful electronic tools she joined CAPRISA as a Clinical Data Manager in 2004 and worked with enjoyment in the field of clinical data management for 13 years. During this time, she married and had three beautiful children, the first of whom has Down Syndrome. As a result, she finds herself unexpectedly combining her interest in genetics, health informatics and patient care with her love for her children, advocating for inclusivity and research advancements in medical care, data collection standards and software development to benefit all genetically diverse people in Africa.

About CINECA:

This webinar introduces the CINECA (Common Infrastructure for National Cohorts in Europe, Canada, and Africa) project, which 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.