Facilitated by Clinical Research Development Ireland, the National Biobanking Working Group (NBWG) was established in January 2019 to address concerns nationally that researchers had in terms of consent and the use of patients’ samples and data specifically for research purposes. The working group comprised of ten members, including one patient representative. A key objective of the group is to develop a national Patient Information Leaflet (PIL) and Informed Consent Form (ICF) template that is clear and easy to understand by public and patients while also compliant with data protection regulations. The patient representative on the working group provided input into the group’s activities including flyers to explain the process of biobanking to patients and members of the public, as well as workshops between patients and researchers to explore the different perspectives on issues relevant to biobanking and health research.

The patient representative was selected following a public advertisement process as well as nominations provided by patient organisations.