Webinar: Strengthening Biobanks through Patient and Public involvement

Strengthening Biobanks through Patient and Public involvement

Webinar organised by the BBMRI-ERIC Stakeholder Forum

Summary:

Constant dialogue with patients, caregivers, and the public is a key guiding principle in biobanking and research. Yet, public and patient involvement, often referred to also as research participant involvement, has not become the usual practice in many biobanks. Often, participants are informed in a one-way manner rather than actively involved. Public and Patient Involvement and Engagement (PPIE) in research is defined as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to,’ ‘about’ or ‘for’ them“.

This webinar will focus on highlighting the importance and benefits of involving patients and public representatives as co-partners in biobanking and research, emphasising their role in shaping the biobanking ecosystem. Biobank experts and patient representatives will share best practices on engagement and involvement, while also addressing barriers, challenges and practical solutions to strengthen participation and co-creation in biobanking.

The central focus of the webinar is to increase awareness of the benefits of patient and public involvement and to encourage the biobanking community to adopt and expand their public and patient involvement and engagement activities.

When: Wednesday, 4^th of February 12:00 – 13:00 CET

Where: online, ZOOM

Link to registration: https://cesnet.zoom.us/webinar/register/WN_ICIiT5roQs2Wdf-ApdWaYA#/registration

Speakers:

• Eric Vermeulen, Chair of BBMRI-ERIC Stakeholder Forum Patients’ and Citizens’ Pillar and Patient Participation Advisor at PostCovid NL
• Ronny Baber, Head of the Leipzig Medical Biobank
• Sara Rebbling, Member of Biobank Sweden’s citizen engagement team and Department manager at Biobanken norr, Region Västerbotten
• Albert Counet, President of Ligue Huntington Francophone Belge and member of the BBMRI-ERIC Stakeholder Forum Patients’ and Citizens’ Pillar

Host: Manuela Pausan, BBMRI-ERIC

Agenda:

• Welcome and introducing the speakers – 5 min
• Short presentations from the 4 speakers – 40 min
• Discussion and Q&A – 15 min