I was invited to speak at the Cúram Summit for 2021 recently.
This was very exciting as it was my first in-person conference. Previously I've only had the chance to attend conferences online due to the pandemic. It was a big surprise to be invited to speak about patient and public involvement at Cúram's summit and I was delighted to be able to represent the patient perspective in front of researchers, postgraduates and clinicians.
I wanted to highlight the importance of PPI in research, especially to the postgrads in the audience who will be our next generation of researchers. I have spent a lot of time in workshops and reading papers these past few years but what always stuck in my head was the stories. Stories of people who got the lifesaving treatment, who were able to enact change through advocacy, or just the journey of one person through their diagnosis. Stories are memorable.
So I decided that I should tell my story. First the story of my diagnosis and then, my journey into PPI and patient advocacy. I wanted the audience to understand the uniqueness of diabetes in that the patient often becomes an expert as they spend most days of the year treating their diabetes. One story really seemed to hit home with people, however. I spoke about my first insulin pump and the major design flaw I uncovered - it beeped every hour. I was able to make the audience understand how difficult this can make it for a young child in school who is already feeling different, to wear a new medical device.
I appreciated the fact that Cúram dedicated a session to PPI and the patient voice as it is so important to the future of research. All the speakers from PPI Ignite, Luminate Medical and ARIW at NUI Galway were fantastic and very informative.