Biobank research is largely dependent on voluntary participation, public trust and societal involvement, since it deals with samples and data of many citizens and/or patients. The Patient and Public Advisory Council aims to offer a national platform for the interests, concerns, and needs of participants, donors, and patients in biobank research, thereby bridging the gap between society and research.
The council consists of representatives of patient and other societal organizations and experience experts with an affinity for biobank and health research. The council meets at least four times a year to discuss one main topic and current developments. Topics that can be discussed are current practices, problems, concerns, or new developments, either brought up by the Council members or on request of the biobank researchers. Meetings result in for example advice, recommendations, a (joint) publication or dissemination towards societal stakeholders.
From 2020 on the Council aims to further increase her network and influence, and with that increase her impact. Also, the Council will become part of the advisory committee for Health-RI, the national infrastructure for personalized health and medicine research.