Patient participation in BBMRI

(L-R) Michael Griffith, Chair of BBMRI Stakeholders Forum and Fabrizia Bignami, EURORDIS, present the Patient Consultation Document to Kurt Zatloukal, Coordinator of BBMRI Preparatory Phase (2008-2010) at the BBMRI Stakeholders Forum meeting on June 9th, 2010 in Brussels, Belgium.

The BBMRI Stakeholder's Forum has produced a consultation document, intended to be used as a guideline of basic principles reflecting patient participation in both new and existing biobanks within an implemented European Biobanking and Biomolecular Resources Research Infrastructure (BBMRI).This document was distributed for consultation to as many European Patient Organisations as possible as a mechanism by which they may indicate their support for the BBMRI initiative and for appropriate patient representation in the proposed infrastructure.

The text was elaborated by the Patient Working Group of The BBMRI Stakeholders' Forum. It does not provide a categorical summary of existing European and international instruments and principles (EU, OECD, WHO, etc.) relating to patient participation, but highlights relevant patient roles in networked biobanking activities as well as indicating existing examples of good practices to facilitate their implementation.

The status of this document is a working draft which may still be subject to modifications.The document was presented to the Steering Committee of the preparatory phase of BBMRI (2008-2010) for consideration in the drafting of policies and procedures for the implementation of the research infrastructure, at the June 9th, 2010 meeting of the BBMRI Stakeholders Forum in Brussels, Belgium.