Advisory Boards
AIDAVA is supported by different external boards including the Sustainability Advisory Board and the Ethics Advisory Board.
Sustainability Advisory Board (SAB)
AIDAVA has involved an external Sustainability Advisory Board (SAB) who will pave the way for sustainable uptake of results.
Mission
The Sustainability Advisory Board's mission is to oversee the Exploitation and Dissemination Activities of the project (WP6) and provide feedback during regular meetings on innovation, market needs, and economic potential of KERs and promote integration of the AIDAVA results. More specifically the SAB is expected to oversee the results of two key workshops: Exploitation & Sustainability Strategy Workshop and Exploitation & Sustainability Planning Workshop during which the project will validate the Key Exploitable Result (KER) candidates, revise, and refine associated exploitation strategies, and to develop concrete action plans via an Exploitation Roadmap.
Composition & Operations
The SAB will include ten opinion leaders/C-level executives from hospitals, public health authorities, EMA, pharma and EHR vendors and by the senior executives from the consortium partners. Consortium partners will nominate their representatives during the first General Assembly and will propose candidate participants for the board. Candidates will be elected on a majority voting system and invited by the chair of the board, Mr Agris Peedu (CEO of NEMC).
The SAB will meet every six months: once a year through teleconference (½ day meeting), once a year joining the life General Assembly (full day meeting). The project is expected to last for four years. Before each meeting, SAB members will be provided with an update of the project and a set of key topics to discuss and relevant documentation, in support of the topics. The advice by the SAB will be reported in official deliverables of the project. Meetings and reporting will be supported by Partner NEMC acting as secretariat of the SAB.
Members
Clayton HamiltonWHO Regional Office for Europe’s Division for Country Health Policies and SystemsLinkedInPetr HolubBBMRI-ERIC
Ethics Advisory Board (EAB)
AIDAVA is fortunate to have an independent Ethics Advisory Board of Experts (EAB). Its role is to provide an additional oversight for the project to consider ethics and data protection matters. The role supports the existing legal and ethical work of each of the partners, who have their own legal teams and research ethics committees overseeing their activities in the project.
The EAB is chaired by Don Willison from University of Toronto. He is joined by Julie Power, Patient Founder and Patient Support at Vasculitis Ireland Awareness, Brendan Barnes, former Privacy Officer at EFPIA, and Peter Singleton, an independent Information Governance Expert and Director of Cambridge Health Informatics.
Key contributions
Key contributions from the EAB have been providing advice on several topics, based on their extensive prior experience across several different projects and Health Information Technology developments.
- How best to present the AIDAVA’s work to local Research Ethics Committees
- Data access and management advice to protect patients’ privacy interests
- Supporting the exploration and understanding of legal and ethical issues, focusing on the impacts these may have for participants and their care teams, and what they mean for the project goals.
- How to better identify and respond to patients’ overall interests across the project – to complement the Patient Advisory Group
- Suggestions on how best to meet Data Protection regulatory requirements (including GDPR) and other data governance needs
- Ensuring that communications to patients are clear and provide realistic expectations regarding project benefits
- How best to capture wider learnings from the data handling processes, to inform future research.
- Sharing reflections on what the project experience teaches us about scale-up and accessibility to the wider patient community.
EAB activities carried out so far
- The EAB have had a hands-on approach to understanding the project. They have participated in a pilot workshop, working with our patient consultants to enhance the studies using G1 for understanding patient experience.
- The EAB has participated in our Consortium Meetings to update the Project and its stakeholders on their activities and offer guidance on areas that are complicated in terms of ensuring the highest standards for data protection compliance and ethical matters. EAB members have also commented directly on the research protocols and approaches with the participant experience as the top priority.
- Examples include:
- input on participant feedback about their experiences
- offering a broader ethical and practical view on using only minimal identifying data when needed, including the use of synthetic data for system testing purposes.
- They have been particularly interested in the patient engagement work and have aligned more with the Patient Advisory Board, inviting its chair to attend EAB meetings and vice versa, offering a more collaborative and richer view on what they are working on in terms of patient experience.
The EAB has been delighted to work with AIDAVA and looks forward to continuing its support for AIDAVA through G2 development and evaluation of the programme.
Members