The BBMRI-ERIC Stakeholder Forum is the main interface for European patients’ organisations, citizens, industry, and academia to interact with the biobanking universe. It is an integral part of BBMRI- ERIC’s governance and culture.
Through the Stakeholder Forum, we are building a sustainable, bidirectional relationship between the biobank community and its stakeholders. The objective is to increase each other’s awareness of needs and expectations about key issues related to biobanking, such as data protection, informed consent in health research, health research priorities, secondary use of healthcare data, and other ethical, legal, and societal issues.
Stakeholder Forum is enshrined in the BBMRI-ERIC Statutes and was put in place upon the inception of the BBMRI-ERIC in 2009 (read the report: https://www.bbmri-eric.eu/wp-content/uploads/stakeholders-forum-report-1.pdf).
The Stakeholder Forum is organised in three pillars:
Patient organisations already involved in biobanking issues have shown a long-standing interest in BBMRI-ERIC and have contributed to the development of the research infrastructure. The strategic aims of the Patients’ and Citizens’ Pillar are grouped in three large themes: (i) Data & digital solutions: AI in biobanking, trusted research environments (commercial access), EHDS, tools to follow-up on the use of samples in research; (ii) Informed consent: automated consent, future of consent; (iii) Patients’ involvement & engagement: involvement of patients and citizens in biobank oversight committees, research projects, ethics committees. All three themes support wider pan-European projects and initiatives, and all three reflect the interests and concerns of patients and patient organisations.
Since 2023 the Forum has a new Chair: Eric Vermeulen. In the past years, BBMRI-ERIC has taken steps towards enlarging the membership of the Patients’ and Citizens’ Pillar in order to better reflect the diversity of membership across its Member States.
Currently, the Patients’ and Citizens’ Pillar includes 20 patient organisations from 13 BBMRI-ERIC Member States and Observers and 6 EU-wide patient organisations. Having a broader membership base will provide not only enriched discussions, but also a good representation of patients’ interests from BBMRI-ERIC Member States and Observers. All BBMRI-ERIC Member States and Observers are invited to have patient organisations represented in the Stakeholder Forum.
The Secretariat of the Stakeholder Forum supports and coordinates the work of the Forum and connects it directly to the BBMRI-ERIC decision-making process.