SYNERG-IE: Transforming Sjögren’s Care Together

Introduction

Research Area:

Sjögren’s disease

What is the research about?

Sjögren’s (pronounced “SHOW-grins”) is a common and serious autoimmune disease that can affect the whole body with symptoms such as dry eyes, dry mouth, severe fatigue and chronic pain. However, other serious complications can include organ and nerve damage. It is common condition but early symptoms of Sjögren’s are often unrecognised, leading to long delays in getting a diagnosis.
SYNERG-IE is a new research project, involving many disciplines and funded by the Health Research Board. The research has been developed in collaboration with Sjögren’s Ireland so the research areas are important and relevant to people living with the condition. These include medicines, health services, education, health policies and future research priorities. Our aim is to reduce the time people wait for a diagnosis, enhance access to treatments, and improve the experiences and outcomes for people with Sjögren’s.
Who is the opportunity for? 
We are seeking engaged and motivated individuals, who are affected by Sjögren’s (which may include family members), and live in the Republic of Ireland, to join our PPI Advisory Panel.
PPI Plans 
The panel will be made up of a diverse mix of 8-10 people. This group will play an important part in guiding our research and making sure the patient perspective is at the centre of our work.
The SYNERG-IE project will run for 5 years.  Members will meet twice per year for approximately one hour in a hybrid (online & in-person) format. Between meetings, PPI contributors will be contacted via email to review research materials and documents, as well as other opportunities. This work will take approximately one to one and a half hours per month. More details below.
We will provide training to the PPI panel at the start, and ongoing support/training/mentoring as needed throughout the duration of the project.
We are all too aware that imposter syndrome and the confidence gap can sometimes stop fantastic candidates putting themselves forward, so please do express your interest below – we’d love to hear from you.

Opportunity for:

Person living with condition / Parent or carer

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?

Online / In Person

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:

PPI contributor’s time / Travel and other expenses

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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