My research journey (so far...) by @rheumpatient [Patient Perspective 16]

My research journey started a few years after I developed rheumatoid arthritis, which inevitably meant giving up my career as a General Dental Practitioner - a job in which manual dexterity is key. After being in 'the wilderness' post diagnosis, I saw an ad in a London paper for lay members on a research ethics sub-committee at Kings College London. It involved reviewing research study applications (primarily in healthcare) from staff and students at the University, which included dental projects. It sounded right up my street so I applied.

Patient Research Partners photograph from the last EULAR PRP Network meeting in Amsterdam, October 2017 (I am at the front, in the middle, with the pink jumper)

I got one of the two available posts after being interviewed by two members of the committee, including the then Chair who remembered teaching me at Dental School. I served a three year term on the committee which aroused my interest in healthcare research, particularly as I was now 'a patient'. Whilst on the committee, I met a fellow member who worked in the rheumatology department at King's and was keen for me to join as a Patient Expert (or Patient Research Partner). I wasn't sure what that was / involved but two years later finally agreed as my term on the committee was coming to an end and I wanted a fresh challenge. 

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. 

I was also fortunate enough during my four years in rheumatology to work with some of the brightest minds in the field. All people who are dedicated to improving the quality of life for people with my and other rheumatic conditions. I was allowed to carry out my own research (With guidance) and have published in peer-reviewed journals and presented at Conferences, including a podiatric medicine conference. There I was, a dentist talking to podiatrists!

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!
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#WhyWeDoResearch The reason I do research is to help myself and
​others with rheumatic diseases.