This week I was a keynote speaker at the AMRC/ABPI Patients First: Pioneering Partnerships Conference. Courtesy of my husband telling me to always say YES to everything!
The conference aimed to highlight the many benefits in establishing, managing and growing partnerships that aim to benefit patients sooner. Partnerships that range between medical charities and industry as well as patients themselves. I spoke about the importance of working together and the unique knowledge that patients and their carers have about the realities of living with their disease. I highlighted how The Brain Tumour Charity calls people like me an “expert by experience” and how they believe they can learn from us, as well as the importance of using data and the willingness of patients to share their data to bring benefits to other patients sooner. It was strange to be standing up on the stage in front of an auditorium of people talking about Silas and wanting to make a difference to families in the future but the response was incredibly positive and I hope that I left people with a clear reminder of why they do what they do – so that there will be fewer stories like mine. It is only by being bold and having our voices heard that patients/carers can begin to make a difference for other patients and advances in technology can only help speed this up.
I heard some inspiring people speak and it is clear that changes are happening – small steps but steps in the right direction – not so much as a trojan horse but several “trojan mice” – to quote one of the speakers – slowly infiltrating the healthcare system.
The video link for my speech is here
The Mighty Boy 