Bio: I am the Data Protection Coordinator for the German Human Genome-phenome Archive project, based at the German Cancer Research Centre (DKFZ). For the past eight years I have worked in roles relating to safe use of senstive data in a research context; this includes assessing whether outputs are safe to release, training researchers, setting up and managing a safe setting, patient engagement, and addressing the legal and data protection challenges of data sharing.
I became interested in DataSHIELD through my work as it can be used to address many of the challenges researchers and Research Data Centres face. I'm delighted to have the opportunity to utilise my experience in this area to help shape the DataSHIELD project.
Bio:
Bio:
Bio: Dr. Amadou Gaye completed his undergraduate degree in Biotechnology at Fachhochschule Mannheim in Germany and earned a master’s in bioinformatics from the University of Leicester, UK. He then received a full scholarship for a PhD in Genetic Epidemiology at the University of Leicester, followed by postdoctoral training at the University of Leicester and the University of Bristol under Prof. Paul R. Burton.
Dr. Gaye’s research focuses on three main themes: (1) biostatistical methods development for epidemiological and genomic studies, (2) investigation of multifactorial conditions, particularly cardiometabolic diseases in African descent populations, and (3) capacity building among underrepresented groups.
Dr. Gaye led the statistical development of the initial released version of the DataSHIELD platform. He also developed other tools for the Biobank Standardisation and Harmonisation for Research Excellence in the European Union (BioSHaRE).
At Meharry Medical College, his department leads research integrating genomics, epigenomics, transcriptomics, and socio-environmental factors to address health disparities and improve cardiometabolic health outcomes in African descent populations.
Bio: I have a strong interest in patients' data, how it is used, safety and security and what is the best way in which patients can access data. This also includes the fact that at times certain information may need to be withheld for the patients own safety and well-being.
This gave me a chance to represent the patients voice in terms of the development and delivery of IT based solutions to help in aiding the improvement in service to patients and the NHS.
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Bio: I am originally from Italy and moved to the UK in 2000, currently live in Exeter, Devon and I am a mother of two.
I have mental health experience, suffer with Barrett's syndrome and I am a carer for my neurodiverse son. In 2013 I decided to use my experience as a patient and carer to improve health and social services getting involved in research studies.
I contribute as a Public and Patient collaborator in several projects in mental health, parenting of children with learning difficulties, data in research, methodology, AI, trial improvements, cancer and multimorbidity.
I am a Digital Critical Friend for the South West SDE and Opensafely (datasets funded by NHS England) by taking part in management and leadership meetings, events and workshops and being a public and patient voice in shaping and developing the two data platforms.
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Bio: Yo is the Executive Director and co-founder of OLS, a Software Sustainability Institute Fellow, NASA TOPS grantee, Research Software Alliance steering committee member, and recently defended a doctoral thesis studying human factors in research software and open communities.
Previous roles include editor for the PLOS Open Source Toolkit, Codefirst:Girls coding instructor, Mozilla volunteer, editor emeritus for the Journal of Open Source Software, board member of the Open Bioinformatics Foundation, and software developer at working on an open source biological data warehouse called InterMine, based at the University of Cambridge.
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.
Below are responsibilities of the DataSHIELD Advisory Board:
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.
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.
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.
DAB membership comprises the Chair, plus a number of 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.
Other non-voting special members in attendance will be recorded in the meeting minutes.
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 least three 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 conducte* d by email of all members of the Board.
A General Meeting of the DataSHIELD Advisory Board and the broade* r 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.
Minutes - Minutes from the DAB meetings.