Fifteen years is how long I’ve been involved in the rheumatology field. As a 27-year-old barman, I was pretty ignorant of the vast of amount of information, research, medication, funding, services and a little bit of patient engagement that was going on all around me in rheumatology, alongside cardiovascular care, cancer care and beyond.
I don’t mean to be disrespectful to the dedicated and knowledgeable patient advocates that worked tirelessly to raise awareness and improve the situation of our fellow patients for decades before. The fact of the matter is that patient engagement today is much better than it was.
If anyone thinks that is something to celebrate however, they are sadly mistaken. While Public & Patient Involvement and Patient Research Partners are now more often thought of as a need to have than a nice to have, there’s nowhere near enough involvement at all levels and at all stages, to pop the (non-alcoholic) bubbles.
For well over a decade now I have been involved as a patient research partner, a patient advisor, a strategic consultant and as a representative of the Irish and European patient community.
I remember all too often the phone calls and emails the day before a submission deadline.
“Peter, we need to have a patient partner on this grant application, can I put your name down?”
What has changed now is that, particularly in research, but also in the pharmaceutical world, if the patient isn’t suggesting the hypothesis, they are involved from the very outset of projects advising on lay summaries, understanding, engagement strategies and on the methodology and analysis too, if training allows.
Researchers need to get their work published and have authored pieces into the relevant journals etc. What I have seen in my time in the rheumatology field, is an increasing willingness to acknowledge patients as co-authors in these journal submissions.
We are by no means at the finishing line where patient advocates are valued to the same level as the researchers, pharmaceutical companies, rheumatologists, professors, healthcare professionals and others, in every room and on every project.
What is clear however, is that much like your author 15 years on from his first involvement in the field, everyone is a lot less ignorant of the value of the person at the centre, without whom nobody else in the room could do their work.
Most recent co-authored publication with Cathy White OT PhD candidate from Trinity College Dublin