Irish Sjögrens patient representation at the 15th International Symposium on Sjögrens Syndrome
15th International Symposium on Sjögrens Syndrome
Dr Joan Ní Gabhann-Dromgoole, Scientifc Lead of the Ocular Immunology Research Group RCSI attended the 15th International Symposium on Sjögrens Syndrome in Rome. Representing Sjögrens research in Ireland Joan provided updates on the recently established researcher-patient partnership between the Ocular Immunology Research Group and Sjögrens patient advocates in Ireland.
Joan’s presentation to the International Sjögrens Network (ISN) featured the main outcomes arising from collaborations with Sjögrens patients. Importantly before beginning their public patient involvement (PPI) in research journey there was not charity or support group specifically dedicated to Sjögrens patients in Ireland.
As part of a campaign to raise awareness Joan and Sjögrens patient advocates co-designed the first information webinar held on World Sjögrens Day 2021. They also designed the first PPI research survey which sought to determine the quality of life of those living with Sjögrens in Ireland, gather information on the main issues experienced by those living with Sjögrens and understand the impact the pandemic may have had.
As a result of this partnership and stemming from their first webinar there have been a number of exciting developments:
– a Sjögrens Patient Advocacy was established in Ireland
– the first Sjögrens information leaflet featuring key healthcare information from Irish healthcare professional involved in the treatment and management of Sjögrens patients was created
– RCSI supported the creation of the first disease specific page hosting key healthcare resources and providing a portal for those wishing to become involved in research to express their interest
– a collaboration with Thea Pharma to help increase awareness and among the general public and healthcare professionals
-the first knowledge exchange where patients engaged in discussions with researchers and experts in PPI, Joan provided patients with results from studies they participated in and attendees heard from expert in brain fog and dental care
The symposium in Rome strongly featured the patients voice and perspective. There were key discussions regrading the nomenclature of Sjögrens Syndrome which has ramifications for patients, patient groups and healthcare providers.
The symposium heard from Kathy Hammitt, Sjögren’s Foundation Vice President of Medical and Scientific Affairs and Coralie Bouillot International Sjögrens Network who provided updates on a recent survey indicating the patient preference:
-for maintaining the term Sjögrens and dropping Syndrome
-for using disease instead instead of syndrome to describe this serious disease
-for refraining from referencing the disease as primary or secondary Sjögrens
Kathy and Coralie provided some of the heartfelt comments from Sjögrens patients around the world including
‘Language absolutely matters, as it affects thinking, research, outcomes. Sjögrens Diseases is a SERIOUS disease and should be recognised as such’
Delegates also heard from Ana Vieira Sjögren Europe EULAR PARE patient foundation. Ana highlighted how the quality of care patients receive impacts on their quality of life. Improvements to care will support those living with Sjögrens to life longer and enjoy life to its fullest.
In addition to patient advocates the symposium featured expertise from national and international research groups, the overwhelming take home message is the need to collaborate, to improve healthcare for Sjögrens patients, to raise awareness of the condition and educate the next generation of medical professionals so that they can improve the quality of life of those living with Sjögrens.
Sjögrens research Ireland believe it is critically important to create and maintain partnerships with patients and public in order to improve healthcare.
The motto of Dr. Leslie Laing and the Sjögrens Society of Canada is very apt: ‘Stronger Together’
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