SYNERG-IE: Transforming Sjögren’s Care Together
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Introduction
Research Area:
Sjögren’s disease
What is the research about?
Opportunity for:
Involvement Opportunity Details
Time
Time commitment:
A half day training event will take place at the beginning of the project. If needed, the training events can be broken up over two days, to support people who have pain and fatigue. The hybrid events will be both online and in person to allow members flexibility. Members will meet twice per year for approximately 1 hour (hybrid format to allow members flexibility). In-person meetings will take place in Royal College of Surgeons in Ireland, Stephen’s Green, Dublin 2.
Contact between meetings:
Between meetings, communication will be via email, and include reviewing of lay summaries, ethics applications, funding proposals, survey/ interview questions, educational materials and other programme documents. The aim of these reviews is to ensure that the information is clear to the public, and that the perspective of people with Sjögren’s is considered. For example, in the past our PPI contributors advised us to shorten our number of survey questions, due to common issues with fatigue and screen time for people with Sjögren’s. This work will take approximately one and a half hours per month. Additional opportunities include co-authorship of papers, co-presenting at conferences, involvement in steering committees and co-development of educational materials.
Length of involvement:
The SYNERG-IE project will run for 5 years. Ideally PPI volunteers would commit insofar as possible to the 5-year duration. However, we understand people with a chronic illness require flexibility and will work with this in mind.
Start date for involvement:
18/08/2024
Logistics
Where?
If online, explain how:
Email, WhatsApp/ text and Teams/Zoom calls.
If in person, explain where:
Royal College of Surgeons in Ireland, Stephen’s Green, Dublin 2.
Other ways of communicating:
WhatsApp/ text and Teams/Zoom calls.
Funding available for:
If no funding available, explain why:
Not applicable
Other Information
Stage of the research study/ programme:
Funded but not yet started
Is this opportunity for PPI in a PhD:
Yes
Closing date to contact researchers:
15/08/2024
Research Team
Contact person:
Gráinne Tynan, Patient Representative Researcher
University/organisation:
Royal College of Surgeons in Ireland
Contact email:
grainnetynan@rcsi.ie
Researcher background:
The SYNERG-IE team are from a variety of backgrounds, including pharmacy, rheumatology, patient advocacy, immunology research, dentistry, health psychology, sociology, GP and interaction & visual design.
Research funder:
Health Research Board
Photo:
Interested in this PPI Opportunity?
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