Constant dialogue with patients, caregivers and the public is a key guiding principle in biobanking. However, meaningful patient and public involvement – also known as research participant engagement – is still not standard practice for many biobanks. Where engagement does exist, it is often limited to one-way communication rather than mutual involvement. Thoroughly incorporating the opinions and lived experiences of biobank participants and their families can bring meaningful insights that benefit not only those research participants but also researchers and the entire biobanking community.
To facilitate a transition to active partnership, the BBMRI-ERIC community, which includes the National Nodes and Stakeholder Forum Patients and Citizens Pillar, have created a set of guidelines. This outcome is a key element of the BBMRI-ERIC 10-Year Roadmap and the current 2025-2027 Work Programme.
The Public and Patient Involvement and Engagement (PPIE) in Biobanking publication outlines key principles and provides guidance to support biobanks in involving patients, caregivers and the public. Special focus is given to partners in Steering Committees and Data & Sample Access Committees to ensure participant voices are included where decisions are made.
