B1MG D1.3 Report of Stakeholders Forum 2021 including recommendations to the 1+MG Working Groups

Gaining the trust of patients, healthcare practitioners, research participants and society at large is paramount for data sharing in genomics and health. This requires involving different stakeholders to take into consideration different national contexts, as well as cultural and societal differences to build informed policies and implement genomics practices in health and research. To this end, the B1MG WP1 efforts are geared towards increasing the engagement, awareness and alignment of the different stakeholders involved in the genomics-based research and healthcare landscape within Europe. This involves bringing together and aligning efforts between the scientific and technical communities, international initiatives, and projects as well as national healthcare and research systems. 

As a part of the WP1 tasks, this report describes the online Stakeholder Forum (SF) that was conducted on the 17th of November 2021 (SF 2021). The primary role of this SF was to strengthen the alignment of B1MG stakeholders with the 1+MG initiative. In particular, the central theme of the SF was the 1+MG Trust Framework. This framework brings together the specific recommendations, guidelines and best practices that can be used to realise the 1+MG vision. Its core components are related to ELSI and data governance aspects, data standards for quality and interoperability in genomics data access and to the infrastructure components for cross-border access to genomics and related health data. 

The SF 2021 brought together over 280 members from the various stakeholder communities registered on the B1MG Stakeholder portal in a full day virtual meeting. The morning session introduced the different elements of the 1+MG Trust Framework and set the stage for the day. The afternoon session was split across six parallel sessions, where the components of the Trust Framework were explored from the perspective of use cases. While four of these sessions included the 1+MG disease use cases - Rare disease (WG8), Cancer (WG9), Common and Complex disease (WG10) and Infectious disease (WG11), two sessions gathered recommendations for 1+MG from the perspective of Industry (WG7) and the Genome of Europe (WG12). Throughout the day, the attendees engaged in specifically evaluating the common pitfalls and gathering recommendations around ELSI, data standards, and infrastructural requirements, which they confirmed are the three priority aspects to cover in the 1+MG Trust Framework. 

The SF has proven to be an excellent instrument to capture the broad expert input from a large group of stakeholders to formulate recommendations to strengthen the work towards realising the 1+MG ambitions. Holding this meeting virtually gave the benefits that many stakeholders could join and participate at this early stage in the project. This report describes the various sessions and summarises the recommendations to 1+MG. The recommendations have been shared with colleagues in the 1+MG working groups on ELSI, standards and infrastructure soon after the SF and have since been taken up by these teams together with the coordination team to seed the design of the further roadmap for the 1+MG working groups.