National Patient Education and Research Engagement Programme.

Inflammation is a critical process in fighting infection. However, if uncontrolled, it can contribute to the development of autoimmune disease, including inflammatory forms of arthritis, which cause joint destruction and disability. Medicines available for patients with RA have improved a lot over the last 15-years, however a significant number of patients still have poor responses, no response or suffer adverse side-effects because it is unclear which medication will work best for them.

Our research is focused on identifying genes or proteins that  (i) drive inflammation early in disease, (ii) differs in patients who respond vs those that don't respond and (iii) identification of new medicines. The success of our research approach relies on the involvement of patients and their families, without whom it would be impossible to perform. However, we identified over the last 3-years through a National-Patient-Awareness-Initiative, the need for the development of stronger patient-partnerships with clinicians and researchers in relation to patient education and research engagement, with <9% of patients having ever being asked to be involved in research (Figures-1-2). Therefore this application aims to develop a National clinical-referral initiative directly to Arthritis-Ireland for all newly diagnosed patients and those already living with Inflammatory-Arthritis to (i)-access support and appropriately designed educational programmes as early as possible,  (ii)-develop a patient-consultative forum that will directly shape the educational programme and the themed webinar-series and (iii)-create a platform where patients are informed and can have meaningful input and involvement with future research-studies.

Overall the outputs will be  (i)-development of one-on-one education through Arthritis-Ireland, (ii)-new educational material for patients that can be accessed at the earliest stage of diagnosis, (iii)-improved patient-researcher engagement in innovative research as meaningful partners, (iv)-impact for patient-care, policy and our healthcare-system, which together will lead to a better Quality-Of-Life for people living with Arthritis.

Award Date
12 September 2022
Award Value
Principal Investigator
Professor Ursula Fearon
Host Institution
Trinity College Dublin
Knowledge Translation Awards