On July 19th 2022 we successfully launched the inaugural Sjögrens Syndrome Knowledge Exchange Event lead by Dr Joan Ní Gabhann-Dromgoole and Sjögrens Ireland with support from the RCSI Public Patient Involvement (PPI) team.
The aim of the event was to support and empower those living with Sjögrens Syndrome to become their own advocates. Scientists from the Ocular Immunology Research Group RCSI, experts in public patient involvement and Sjögrens patient advocates provided updates on their partnership and discussed with attendees how to improve Sjögrens Research in Ireland.
This event was launched by Prof Tracy Robson, - Professor & Head of School of Pharmacy and Biomolecular Science, RCSI University of Medicine and Health Sciences. The researcher-patient co-designed webinar also included two guest speakers, Dr Sabina Brennan, who discussed brain fog, and Dr Eleanor O'Sullivan who discussed dental care for those living with Sjögrens. It also showcased the findings from patient informed research studies conducted in 2021 and highlight the advances that have been made as a result of scientist-patient partnerships.
Time stamps:
Welcome 00:00:27
Lorna Kerin – Manager Public Patient Involvement (PPI) RCSI University of Medicine and Health Sciences
Event launch 00:05:06
Prof Tracy Robson - Professor & Head of School of Pharmacy and Biomolecular Science, RCSI University of Medicine and Health Sciences
Sjögrens Research in Ireland 00:12:55
Dr Joan Ni Gabhann-Dromgoole - Scientific Lead Ocular Immunology Research Group (OIRG), RCSI University of Medicine and Health Sciences
Opportunities for PPI in RCSI 00:37:30
Lorna Kerin
Sjögrens Ireland Advocacy Group 00:40:39
Deirdre Collins- Sjögrens Patient Advocate
Brain fog 00:47:57
Dr Sabina Brennan - Chartered health psychologist & neuroscientist
Dental care for those living with Sjögrens 01:38:18
Dr Eleanor O’Sullivan - Clinical lecturer in oral surgery (Retired)
Getting patients and public involved in research and education 02:26:50
Dr Michelle Flood - Patient and Public Involvement (PPI) Ignite Lead, RCSI University of Medicine and Health Sciences
Meeting closing remarks 02:30:18
