Independent (Robert Joyce)

Knowing about an illness/disability doesn't give you a true understanding of what it is like to live with this condition. When I started using my experience of living with Multiple Sclerosis to help researchers develop better research I could see its benefit. I was employed as a Research Assistant on the COB-MS (www.COB-MS.com) study to be the voice of the patient. As the study progressed my role expanded, eventually being described as an Embedded Patient Researcher. I brought value to recruitment, training, design of material, participant interviews, and also sharing the value of the patient experience. This study won the Inaugural PPI Ignite PPI Award. During this work I trained with EUPATI to be a Patient Expert, and this enabled me to be involved in other aspects of the health environment. Working on the Health Service Executives Patient Panel, being a member of the HSE Research Governance Committee, and becoming a committee member for the Patient Engagement Open Forum. I was a member of the Servier Patient Advisory Committee, and was the originator of the idea for their BoostCamp, which brings patients and researchers together to innovate around the issues faced by the patient community. The first event was held in July 2025, and had 10 novel ideas, which Servier is now supporting with its knowledge of supporting innovation. In 2022 I finished my role on the COB-MS study, and as I am unable to work traditionally, I started to receive Invalidity Pension. This is a support given by the Irish government to help people like me. This support prevented me from using my lived experience anymore. So I gathered a coalition of organization involved in health research and policy to lobby the government to change the rules of this payment. In May 2025, I got the rule changed, so I can now be active again. Since sharing this experience I have learned this is not an Irish problem. It is international, and now I am working with patient colleagues around the world to help them make change in their countries. I also have ideas on how to restructure the Patient Advocacy funding model, which I am working on with international partners.