Designing a Public Awareness Campaign on Biobanks with Participatory Research Techniques

Biobanks are the cornerstone of human research studies. These are resources that store human body materials and associated data for researchers. Biobanks are a strong asset for Belgian university hospitals and academic research centers. 

However, biobanks do not gather much interest in the media or in general health communications in Belgium. BBMRI.be, a not-for-profit initiative that connects 20 Belgian public biobanks, is concerned by this lack of information in the public sphere. To propose solutions to enhance public and patients’ interest on biobanking - and on research in general - the BBMRI.be Stakeholder Involvement Group (BBMRI-SIG) has been formed. The group’s mission is to gather together scientists, patients, members of patient organisations, professionals from pharmaceutical and biotechnology companies, biobankers and hospital representatives, and to foster collaborations between stakeholders. To tackle the lack of awareness in the public sphere, the BBMRI.be-SIG and its partners have engaged patients and patients’ organisations in public and semi-public participatory activities like workshops, visits in anatomopathological laboratory and focus groups. The results of these encounters allowed to grasp patients’ understanding and perspective on biobanking, to seek their local knowledge (i.e. experience of patients with biobanking in their own care pathway), to give more transparency on hospital’s activities and to explicit the integration of research into care. With this knowledge, a public awareness campaign is currently being launched to enhance the visibility on biobanks and to raise more awareness and engagement. In conclusion, BBMRI.be has the opportunity with its partners to develop a unique engagement methodology and to experience that participatory research techniques have the potential to build strong communities. Hopefully, with the aim of making biobanks more visible, the actions of this community shall result in significantly increasing research literacy of both the public and the patients and in paving the way towards a better engagement of citizens in research.

Authors

Patrick Miqueu (1), Annelies Debucquoy (2), Elke Smits (3) on behalf of the BBMRI.be Stakeholder Involvement Working Group

Organisations

Institut Jules Bordet – H.U.B; (2): BBMRI.be - Belgian Cancer Registry; (3): Biobank Antwerp, Antwerp University Hospital, University of Antwerp

Presenting author

Patrick Miqueu, Coordinator Research Promotion and Patient Engagement, Institut Jules Bordet – H.U.B
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