The Trinity Biomedical Sciences Institute (TBSI) organised a national workshop in January 2020 for patients for over 20 patients with specific conditions to co-author patient and public information material. The aim of the workshop was to involve patients in the design and development of the material to ensure that the material benefitted from a full understanding of the disease diagnosis and treatment pathway. The workshop allowed patients to interact with clinicians and scientists, and several patients and researchers continued their involvement and wrote grant proposals together.
The PPI representatives were identified by public advertisement notice and by patient organisations representing patients with specific conditions. Representatives selected were all individuals with a specific condition. A description of the role was provided to the PPI representatives.