I found being a Patient Expert both interesting and frustrating. Interesting in that I was involved with advising on several projects including clinicaltrials. Frustrating in often feeling not listened to or being consulted last minute about projects - from design through to dissemination. Reimbursement of expenses was also an issue that periodically raised it's head. As so often happens in research, budgeting for patient-public involvement (PPI) can be an afterthought, (or not a thought at all). Pre-grant application there is usually no funding for PPI, though recently Arthritis Research UK have started making funds available for this.
So now I have entered the next phase of my research journey. I am currently a Patient Insight Partner for Arthritis UK, a EULAR (European League Against Rheumatism) Network Patient Research Partner (PRP); as well as a member of EMEUNET (a network of 'young' rheumatologists and rheumatology researchers - just made it in age wise!) and the EULAR study group for Collaborative Research (which suggests ways researchers and PRPs across Europe can work together better). I also occasionally patient review articles for the BMJ (British Medical Journal). All in all there are many ways to be involved with research and I find that old saying particularly true; variety really is the spice of life!
others with rheumatic diseases.