By Carmen Monge
Lead, OncoDaily Lived Experience Advocacy Hub
What happens when you bring researchers, clinicians, policymakers, innovators and people with lived cancer experience together in the same space?
A lot of conversations, new connections, interesting projects… and apparently, some very fun photobooth pictures too!
From 29 September to 1 October, I had the opportunity to represent OncoDaily and the Lived Experience Advocacy Hub at 5 Years EU Cancer Mission: Stronger Through Connection in Brussels.
For me, this event was particularly special because it created opportunities for people with lived cancer experience to be part of conversations about the future of cancer research and care.
And that is something I believe we need more of.
More than sharing our stories
When we talk about involving patients and survivors in cancer research and important projects, we often think about only sharing personal experiences.
Of course, our stories are important! They help people understand what living with cancer can look like beyond medical appointments and treatment.
But lived experience is much more than a story.
People with lived cancer experience can help researchers identify priorities, understand barriers, improve communication, develop patient-friendly information and consider outcomes that really matter to patients.
We can contribute to research, education, policy and healthcare in ways that complement scientific and clinical expertise.
And this involvement should not happen only when a project is almost finished.
Why not include people with lived experience from the beginning, when the research questions are being developed and decisions are being made?
For me, this is what meaningful patient involvement should look like.
A photobooth with a message to the Oncology ecosystem
At the OncoDaily stand, we wanted to create something a little different.
Alongside presenting the Lived Experience Advocacy Hub and having conversations with people attending the event, we brought some photobooth boards with messages about advocacy, research and lived experience.
Some were serious:
“Nothing About Us Without Us.”
“Behind Every Data Point Is a Person.”
“Expert by Experience.”
And some were a little more playful:
“Kinda Chic to Be an Advocate.”
“Advoca-see? I’m here!”
Because advocacy can be serious and important, but we can also have fun while doing it!
The idea was simple: invite people to take a picture, start a conversation and share a message that matters to them.
And one of my favorite parts was seeing the boards travel beyond our own stand, appearing in photos with advocates and people involved in different European cancer projects.
It was a small activity, but it gave us another way to talk about something much bigger: the importance of including lived experience in cancer research and decision-making.
Behind every project, there should also be people
During the event, I had the opportunity to meet people working on projects addressing different aspects of cancer care, including hereditary cancer, quality of life, survivorship and the needs of adolescents and young adults (AYAs) with cancer.
It was especially interesting to learn about initiatives such as EVITA, MAYA, TRANSCEND-XR, PEARL and the European AYA study, among others.
Each project approaches a different challenge, but they all made me think about an important question:
How can we make sure the people who will be affected by these projects have a meaningful role in shaping them?
Because behind every research question, every dataset and every innovation, there are people whose lives may be affected by the results.
And while scientific evidence is essential, lived experience can help us understand things that numbers alone may not explain.
What does quality of life actually mean to someone after cancer treatment?
What information do patients wish they had received earlier?
What barriers are people facing when accessing care?
And are we measuring the outcomes that matter most to them?
These are some of the questions that people with lived experience can help bring into research discussions.
Stronger through connection – and collaboration
The name of the event, Stronger Through Connection, really reflects what I took away from Brussels.
It was wonderful to meet people behind so many projects, reconnect with advocates and finally meet in person some people I had only known online.
But I also came back thinking that connection should be the beginning, not the final goal.
We need to turn those conversations into opportunities for collaboration.
This is also one of the reasons why we are building the OncoDaily Lived Experience Advocacy Hub: to connect people with lived cancer experience with opportunities to learn, contribute, collaborate and share their expertise across the oncology community.
Because sometimes there are researchers looking for patient perspectives, and advocates who would love to contribute, but they simply have not found each other yet.
We want to help make those connections easier.
Let’s keep the conversation going!
Brussels was just the beginning!
We would love to keep bringing our advocacy photobooth boards to future events, including ESMO, and invite more people to join the conversation.
Whether you are a patient advocate, researcher, clinician, policymaker or someone working on a cancer project, we would love to hear your perspective. We are bringing even more boards and stickers for ESMO, so look for us.
And if you are working on a project and would like to involve people with lived cancer experience, let’s connect!
And if there is one message I hope people remember from our photobooth, it is this:
Lived experience is expertise. Now let’s build with it.
You can also read:
