Article Text

SP0081 Fifteen years of experience with patient involvement in research. What has been achieved?
  1. J. Kirwan
  1. University of Bristol, Bristol, United Kingdom


At our Academic Rheumatology Unit there we have recorded 37 different patients who have been involved in contributions to the development and implementation of our research programme over the last 15 years. They have contributed on 147 different occasions including providing advice and support, helping to write grant applications, making contributions to protocol development, analysing results and interpreting results. Our Patient Research Partners have be co-authors on 10 publications. In addition, through my role as Patient Coordinator of the OMERACT Group, I have involved 58 patients in this 2-yearly international conference since 2000. Involving patients has helped to direct our research efforts, and has helped to ensure we have grasped the nature of the research questions we want to address. I will provide a local example of a PhD project where progress was crucially dependant on patient insights, and where patient involvement in the work has helped us to appreciate them. I will refer to the international example of the development of fatigue as an outcome measure in rheumatoid arthritis, which was initiated and facilitated at all stages by patient partner involvement. Working together, we have achieved a step improvement in the quality and relevance of research into the consequences of arthritis and some new approaches to treatment, and we have learned which techniques are best able to support patient research partners in making their contributions.

Disclosure of Interest None Declared

Statistics from

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.