Together is Better: Transforming arthritis research in Ireland

Minister of State for Disability Issues, Finian McGrath, TD addressed the first national arthritis research conference open to the public, medical professionals and academics, which took place on Friday, 02 November 2018 in University College Dublin. 

Involving patient expertise in the ongoing research to improve their quality of life seems obvious. However, traditionally, patients have not been involved in the decision making processes around health research.

Pictured (l-r): Back Row: Prof. Oliver Fitzgerald (speaker), Denis O'Sullivan (patient & speaker), Dr Susie Donnelly (speaker), Grainne O'Leary (CEO Arthritis Ireland and speaker), Prof. Gerry Wilson (session co-Chair), Dr Stephen Simpson (Head of Research Versus Arthritis (UK) and keynote speaker), Prof. Denis Shields (speaker), John Sherwin (patient & session co-Chair). Front Row: Dr Stephanie Merrigan (speaker), Wendy Costello (Chair of iCAN Ireland and session co-chair), Dr Daire O'Leary (speaker), Dr Emma Dorris (conference organiser), Hugh Giffney (CÚRAM/UCD Vet, speaker), Prof. Orla Feely, VP for Research, Innovation & Impact.

The aim of this conference was to promote a more holistic approach to arthritis research and encourage public involvement in research. The entire conference was accessible to the public and included patient speakers and moderators, workshops designed by patients and workshops specifically for the public to demystify what research is, and how you can get involved.

The conference is part of the UCD Patient Voice in Arthritis Research initiative led by UCD Centre for Arthritis Research and supported by the Health Research Board of Ireland. Here, researchers are working together with patients, family members, carers and the interested public to improve research, health and quality of life for those living with arthritis.

Arthritis is the biggest cause of disability in Ireland and is a catch-all term for over 100 different conditions. It is a costly disease; both personally to those living with the disease, and to the economy.

Rheumatoid arthritis, which is due to a problem with the immune system, usually affects those of working age. About 75% of people diagnosed with rheumatoid arthritis are working at the time of diagnosis. The ability to work is affected in about half of these people within 5 years, with every third person diagnosed with rheumatoid arthritis becoming work disabled. About 22% of people will stop working entirely within 5 years due to their condition, and a further 18% will stop working due to a combination of arthritis and other factors such as depression.

Ireland punches above its weight in terms of research into arthritis and other rheumatic diseases. There is a very active research community and have flourishing international partnerships. Significant investment has been focused on research by Arthritis Ireland, the Irish arthritis charity.

Commenting on the UCD Patient Voice in Arthritis Research initiative, Dr Emma Dorris from UCD Centre for Arthritis Research said,

“Through The Patient Voice, we are working to reframe research to focus on the patient, rather than the disease. By working together, people with lived expertise of their disease, doctors, nurses, health professionals, scientists, economists, researchers and policy makers, will greatly increase the relevance and impact of research, and improve the quality of life for those living with arthritis, faster.