Arrow Left Initiatives Patient & Public Advisory Council

Biobank research involves samples and data of many citizens and/or patients. It depends on voluntary participation, public trust and societal involvement. The Patient and Public Advisory Council aims to offer a national platform for the interests, concerns, and needs of donors, patients and participants in biobank research. 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 for discussion 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 advice, recommendations, a (joint) publication or dissemination towards societal stakeholders.

Recommendations from the Patient and Public Advisory Council

The council has made recommendations on several themes on request of or researchers, e.g.:

  • Self-recorded data for research:
  • Incidental findings
  • Information about scientific use of leftover biomaterial:
  • Communication towards public and patients
  • Transparency about research goals, approaches, results and conclusions
  • Informed consent and privacy
  • Next steps towards implementation of research results and impact on healthcare

In case you have a request for the Council or want more information, please contact the Council Secretary dr. Tieneke Schaaij-Visser. website

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