The Workshop is being organised as a breakout session within the four day RIWC2024 Programme; it is our ‘crowning event’ to consolidate and enhance Fighting Blindness’s core mission for patient and public involvement PPI across the vision research cycle and so will invite renowned research experts as well as patients with vision loss from Ireland and across the world.
The aim is to facilitate in practical, innovative ways a framework for PPI to be more deeply embedded within vision loss research internationally, also relating it to the latest research developments for ensuring relevant impact by patients.
For example, by having patients present to researchers/clinicians on how best to share their findings and its implications with the wider public.
FB established the Vision Impaired Person’s (V.I.P.) network across island of Ireland, empowering people with sight loss to influence decisions made around research. This critical collaborative process was facilitated over years through public events such as PPI Training events for researchers and those affected by vision loss. Recently, webinars in June and September 2023 presented to the V.I.P. network gave research and clinical updates on Inherited Retinal Diseases (IRDs) and Age-Related Macular Degeneration (AMD).
This Workshop will build on FB’s expertise implementing the V.I.P. network in Ireland and primarily for Irish patients and explore how its successful outcomes can be applied internationally; also drawing lessons for Ireland from international best practice in PPI from patient representative groups attending.
The outcomes – a summary presentation of PPI priorities and best practices in international vision loss research including recommendations on how PPI advocacy might influence direction of research – will be disseminated to country affiliated organisations made up of patient-led voluntary groups, charities and foundations. The presentations; Q&A and group/panel discussions will also be filmed and made available including on YouTube.