The HBP Data Governance Working Group (DGWG)

What is Data Governance?

Data Governance (DG) is the overall management of the availability, usability, integrity and security of data used in an organisation. A sound data governance program ensures that data is consistent and trustworthy.

Concretely, DG in the Human Brain Project includes multiple groups with responsibility for developing, approving, organising and implementing policies, procedures and standards for the most effective use of the Human Brain Project’s structured and unstructured data.

Essentially, data governance is a strategy. It is a set of formal processes that ensures data is properly managed: how information is generated, stored, used, maintained, etc. In a legal context, data governance includes control and oversight over related policies, standards, and procedures, with effective oversight managed by a regulatory group.

In other words, it combines strategies and information, focusing on privacy, quality and integrity of the data and supporting the HBP in meeting regulatory requirements. Ultimately, it ensures that data serve the purposes of the Human Brain Project in an ethical and legal way so that it can maximize the potential of the data.

“Developing responsible data governance and data sharing practices”: the HBP Data Governance Working Group (DGWG)

The Human Brain Project deals with different types of data from different provenances, for different uses, by different people, in different contexts and countries, with different objectives and different means.

In a single sentence, one can understand how crucial Data Governance is within the HBP. The DGWG includes an assembly of DG representatives from each Subproject, representing all facets of the activities across the project. This group supports the advancement of research in the Human Brain Project by developing responsible data governance and data sharing practices for approval, adoption, and implementation by the decision-making bodies in the project.

The DGWG works closely with other bodies in the HBP, notably the Science and Infrastructure Board, the Directorate, the Data Protection Officers, the Scientific and Technical coordinators, the Medical Informatics Data Governance Steering Committee, and other relevant bodies such as the Ethics Support team, and the Ethics Advisory Board.

Under the first phase of the project (SGA1), the DGWG produced, amongst other documents,

For SGA2, our current activities include:

  • Continuing revision of the Data Policy Manual
  • Drafting the Charter on Governance of Data Sharing and Analysis
  • Appointing the membership of Data Governance Audit Committees
  • Supporting the development of the Data Curation Plan, KnowledgeGraph, and Data Management in the HBP

Members and Roles

Ethics Director Bernd C. Stahl
Chair, Ethics-related Data Governance Task Leader Tyr Fothergill
Co-Chair, SP8 Ethics, Data Governance, and Outreach Officer Florent Gaillard
Co-Chair, Technical Coordinator Jeff Muller
Scientific Coordinator Martin Telefont
Technical Coordinator Martina Schmalholz
Data Protection Officer Kevin McGillivray
Ethics Compliance Officer Will Knight
SP1 Representative J. Douglas Armstrong
SP2 Representative Simon Eickhoff
SP2 Representative Bertrand Thirion
SP3 Representative Mavi Sánchez-Vives
SP4 Representative  
SP5 Leader Jan Bjaalie
SP6 Representative Katrien van Look
SP6 Representative Daniel Vare
SP7 Representative Colin McMurtrie
SP8 Representative Vasilis Vassalos
SP9 Representative David Lester
SP10 Representative Fabrice Morin
SP11 Representative Ainhoa Echeverria
SP11 Representative Annapoorni Sitaraman
SP12 Representative Manuel Guerrero

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

This page was last updated on 06/08/2018.