Terms of Reference

Mission

The mission of the DataSHIELD Advisory Board is to provide external insight and expertise to help guide the strategic direction of the DataSHIELD community, ensure longer term sustainability, and to assist in the promotion and uptake of DataSHIELD by others; the community comprises the adopters, contributors and users of the software. The DataSHIELD Advisory Board will carry out these missions using an approach encompassing transparency, equality, diversity and inclusiveness of community members.

Responsibilities

Below are responsibilities of the DataSHIELD Advisory Board:

General responsibilities

  • To effectively communicate the vision and purpose of DataSHIELD (DS) and the DS community
  • To identify strengths, weakness, opportunities and threats (SWOT) of DS
  • To review DS-related activities, to avoid duplicate efforts and promote the improvement of existing ones
  • To promote strategies for the implementation and use of DS-based research among existing research networks.
  • To improve communication across the DS community
  • To work with the DS community on maintaining the core architectures required for sustainable exploitation of a DS platform
  • To provide leadership and foster a respectful, inclusive, and collaborative environment in the wider DS community
  • To keep an overview of the activities, progress and issues in the DS community
  • To specify processes, policies and procedures by which DS community members can contribute to the DS code base and resources
  • To advocate for and represent the DS community at external meetings and events, including leading the organisation of the annual DS meeting, incorporating both scientific and administrative (“routine”) business

Specific Responsibilities of the Chair

  • The Chair ensures that DAB functions properly, that there is adequate participation at meetings, that all relevant matters are discussed and that actions or decisions are made and carried out
  • Plan and run meetings in accordance to these ToR
  • Bring impartiality and objectivity to meetings and decision-making
  • In the event of a tie, the Chair shall provide a deciding vote
  • In the event of absence from an Advisory Board meeting, the Chair will nominate one or more other Board members to organise a deputy. Any person who deputises shall temporarily assume the roles and responsibilities of the Chair.

Specific Responsibilities of Board members

  • To take a proactive role in DAB
  • To attend DAB meetings regularly (approximately 4 meetings a year)
  • To contribute to projects, initiatives or activities agreed by DAB
  • To feedback or liaise with the wider DataSHIELD community where necessary
  • To inform the board if you can no longer commit the time to DAB

Membership

DAB membership comprises the Chair, plus 9 voting members. Non-voting special membership may be conferred as decided by the DAB. Additionally, the DAB may invite guest speakers with specialist knowledge on specific topics to meetings or to assist the DAB as necessary.

Current membership:

  • Chair: Andrei Morgan – INSERM, Paediatrician (specialising in Neonatology) Epidemiologist, RECAP Preterm (Paris).
  • Full board members:
    • Angela Pinot de Moira - University of Copenhagen, Epidemiologist, LifeCycle (Copenhagen)
    • Artur Rocha - INESC TEC, RECAP Preterm, EUCAN-Connect (Porto)
    • Becca Wilson - UKRI Innovation Fellow with HDR UK, University of Liverpool (Liverpool).
    • Juan R González - Assoc. Research Professor, ISGlobal - Institute for Global Health (Barcelona) and Professor of Maths at Barcelona University. ATHLETE project
    • Kim Cajachagua Torres - Medical doctor (specialized in Health Management). Erasmus University, PhD candidate, Generation R (Rotterdam).
    • Rosa Gini - Public Research Institute with access to Big Data Tuscany, Italy. ConcePTION project. Expertise in multi-database studies in ConcePTION project. Privacy regulations on data in Italy.
    • Simon Parker - Data Steward at DKFZ German Cancer Research Centre (Heidelberg), and Data Consultant at Cancer Research UK.
    • Stuart Wheater - Computer scientist at Newcastle University with experience of building distributed systems, alumni of HP Arjuna Labs, HP Middleware. (Newcastle).
    • Yannick Marcon - Consultant/ Software engineer – Epigeny (own company), co-PI at Maelstrom Research (Montréal).
  • Non-voting special members in regular attendance
    • Secretary: Elaine Smith
    • Paul Burton
    • Other non-voting special members in attendance will be recorded in the meeting minutes

Mode of Operation

  • Membership of DAB is reviewed every 2 years. A call for new members to the board will occur when a member steps down, giving opportunity for any member of the DataSHIELD community to apply.
  • The Chair will engage with non-contributing board members. If not satisfactorily resolved, the member can be asked to leave the advisory board.
  • The DAB will meet at leastthree times per year (i.e. every 4 months).
  • The presence of 6 full board members (including the Chair) are required for a meeting to be quorate and to go ahead. In the event that the Chair is unable to attend, the Board will deputise a member to chair the meeting. The Secretary will identify a minute-taker in the event of their absence.
  • Decision making will be taken by a majority vote within the Board meetings. In the case of time-urgent decisions, a poll will be conducted by email of all members of the Board.
  • A General Meeting of the DataSHIELD Advisory Board and the broader DataSHIELD community will be held annually at the DataSHIELD Conference.
  • Minutes will be made available on the DAB website.
  • DAB data policy is in line with the host institution. The host institution is currently Newcastle University.
  • DAB follows the DataSHIELD code of conduct (as currently displayed in the forum code of conduct)
  • These terms of reference will be reviewed and updated by DAB as necessary.