The Patient Voice in Arthritis Research is a initiative to actively engage arthritis patients, arthritis researchers and other interested parties (patient advocates, families, carers, healthcare professionals, policy-makers and those with an interest in arthritis research) in discussions and decision-making processes, which positively impact on arthritis research and outcomes for patients. The Patient Voice in Arthritis Research initiative is currently working with a variety of patient partners on projects to include the experience of young people and children living with arthritis in research priorities, and to raise awareness about rare and chronic conditions. The initiative also works with patient partners to prepare and submit co-designed proposals for various research funding applications. The initiative co-produces a quarterly newsletter with patients and researchers in which each edition focuses on a specific theme. The newsletter was created in response to feedback from patient insight partners at the first Patient Voice in Arthritis Research discussion forum in 2017.
The UCD Centre for Arthritis Research Steering Committee which oversees the Patient Voice in Arthritis Research initiative comprises of 10 members, including three patient representatives. Each patient representative represents a specific disease area: inflammatory arthritis, degenerative arthritis and rare disease and paediatric (child and adolescent) rheumatology.