Patient Advocate Events Insights is a collection of conversations with patient advocates and people with lived cancer experience, sharing their perspectives on scientific conferences, training, and events and the value of bringing the patient voice into research and healthcare.
Digestive Cancers Europe (DiCE) Masterclass
By Pamela Deasy, Ireland
What motivated you to attend this course?
I am on the Patient Advisory Board.
How did you fund your attendance?
Patient Organisation. If we had to self-fund, I think there would be fewer advocates travelling anywhere.
What session had the biggest impact on you, and why?
Updates from Member Organisations and Patient Advocates.
As individual advocates, sometimes we feel we are not heard, but listening to others throughout Europe, we realise we are not alone and that advocates have the same issues. We also heard from Kevin, the brother of Gabriel, who spoke about his loss after Gabriel passed away from cholangiocarcinoma at 23 years of age, and I do not think there was a dry eye in the room.
This strengthens my desire to speak up on behalf of others, because no matter the age, we need to be heard.
Did you feel that the patient perspective was well represented?
Yes. At our Masterclass, patients are recognised as valued partners, with our lived experiences woven throughout the discussions rather than being treated as an afterthought.
The event was exceptionally well organised, and I now call the DiCE team friends-we are like an extended family. Every detail is considered to ensure participants’ needs are met. The quality of the sessions was fantastic, with varied topics and an environment where collaboration could thrive.
If you could change one thing about the event for patient advocates, what would it be?
For the DiCE Masterclass, anything I have feedback from previous years has been acted upon. I previously mentioned the late-night dinner timing, which does not suit many digestive cancer patients, and this was thoughtfully addressed the following year.
The team consistently goes above and beyond, and I am honoured to collaborate with a team that listens to feedback each year, so I have only praise to give.
Did you make any new collaborations or connections?
Yes. These are fantastic networking events, and there are always new faces to talk to and listen to their concerns. Each new connection brings fresh perspectives and opportunities to make an impact.
If another advocate is considering attending next year, what advice would you give them?
Do it, and do not be afraid of going!
The very first one I attended in Europe, I was nervous and heading off into the unknown without knowing anyone who was going. However, the DiCE team was great at introducing me to others, and meeting new people strengthens our voices throughout Europe and beyond.
What would you like organizers to know about people with lived cancer experience and advocates who attend this event?
I have let them know! For example, those of us living after digestive cancers digest food differently and often cannot eat late at night. Instead of having the main dinners at 9 p.m., we now have them around 6 p.m., which helps us all greatly.
These small changes mean a lot to us, and we know our needs are taken into account.
What value do patient advocates and people with lived experiences bring to researchers, healthcare professionals, and industry during scientific conferences?
We remind them that scientific innovations should be focused on what truly matters to us-the patients-and that behind every piece of data is a person, a loved one, and a life that matters.
EUPATI Patient Expert Training Programme on Medicines’ Research and Development