Project deliverable Open Access
Horgan, Denis; Kok, Ruben; Bernini, Chiara; Andreu, Toni; Oldoni, Emanuela; van Rijswijk, Merlijn
B1MG WP1 organises the stakeholder engagement in the field of genomics-based health that have the expertise and capacities to play a role in the European 1+MG Initiative. Priority is to engage key stakeholders in the essential workstreams organised as part of the B1MG Work Packages (and their corresponding 1+MG Working Groups). Stakeholders are organisations of a variable nature and scope, and B1MG chooses to organise their involvement at multiple levels.
Stakeholders are here defined as European, national and regional organisations and individuals active in and/or interested in the development and implementation of genomics-based health in national and regional healthcare systems. In particular, B1MG addresses stakeholders active in and/or interested in realising the key goal of the 1+MG initiative: the ability to make genomics and related health data accessible across borders for trans-national use in research, diagnostics and/or innovation of healthcare.
The B1MG stakeholder organisation targets stakeholders at the follow level, and in the following manner:
General public: B1MG has opened a website to inform the general public on issues related to genomics-based health and data access.
All stakeholders with an active role in 1+MG: B1MG arranges for a Stakeholder Forum and Stakeholder Portal to inform and engage the broad range of key European, national and regional organisations that play an active role in implementation of genomics-based health and help create the conditions to facilitate cross-border data access.
Selection of key European stakeholders to drive and help realise the1+MG initiative: B1MG arranges for a Stakeholder Coordination Group bringing together experts from a selected range of key organisations and projects crucial for the realisation of the 1+MG Roadmap until and beyond 2022.
The B1MG Stakeholder Forum (SF) acts as a key platform of interaction and consultation between all active stakeholders from B1MG, including stakeholders in signatory countries of the 1+MG initiative and at the European level. Collecting input and discussing viewpoints from patient organisations, clinicians, medical specialists, regulators, industry and HTA bodies and others will be crucial to shape the work of B1MG, especially in its thematic Work Packages WP2 (ELSI), WP3 (data standards and quality), WP4 (technical infrastructure) and WP5 (implementation in healthcare), alongside the implementation of the B1MG project. The role of the SF will be to provide methods to coordinate between stakeholders at the EU, country and regional level and to actively inform the stakeholders and involve them in the B1MG Work Packages.
Stakeholder Coordination Group
The B1MG Stakeholder Coordination Group (SCG) acts as a strategic council to the 1+MG initiative, and includes a selection of experts of key European initiatives, umbrella-organisations and major projects derived from the Stakeholder Coordination Forum. Additionally, B1MG SCG members are selected to help advance the field and align agenda’s along the thematic B1MG Work Packages WP2-5.
B1MG D1.1 - Document describing the operational organisation and processes for the Stakeholder Coordination Group (SCG).pdf