At a similar time that I got fascinated by what was occurring in the world of pharma I was also engaging within the realms of research advocacy and getting more involved wherever I could.
This led me to apply to become a part of the Patient Research Ambassador Initiative (PRAI), which is part of the National Institute of Health & Research (NIHR) in the UK. Becoming a PRA has meant involvement in a few NIHR projects and initiatives but the main one is collaborative live research event that we were helping to create as a group. I helped to initiate the project, as a collaborative one, which would hopefully engage people from all walks of life that have problems with fatigue joining in on a Fatigue based event where there’ll be workshops and speakers, we are looking forward to seeing how the agenda turns out.
To be allowed to take part in this opportunity in the beginning was fantastic. The idea of working alongside professionals and experts to create a new type of conference was very exciting, and fabulous for support groups, professionals, and general public all across the North East UK not just FibroFlutters.
The idea is to hopefully come away with a conference that can be running annually, this is a test pilot so wish everyone involved luck please!
I passed over my opportunity to take part in the Steering group for this project even though I was key to its initiation because my fellow Founding Five Flutter, Ian Foulger, who is ‘our’ expert in this field of illness is better suited for the project.
My expertise lies within the realms of Rheum, musculoskeletal, connective tissue and Fibromyalgia /Chronic Pain Disorders. It seemed silly to not let him do it, of course he is really happy about the opportunity being registered with the local PRAI. Also, to allow me to be free to help with the build up to the eyeforpharma conferences in October.
There are now 3 of us that are registered as patient research ambassadors with NIHR ~ National Institute of Health & Research, including myself, Carole Scrafton, fellow Founding Five Flutter Ian Foulger and also one our Facebook admins, and Benefits system expert, Mark Lawler. #PRAI #researchadvocacy