Sandrine Lavallé is a dedicated EUPATI Fellow and passionate advocate for meaningful patient involvement in research. Sandrine’s connection to EUPATI dates back to its early days in 2012, when it first sparked a shift in her thinking—away from viewing patients merely as research subjects and toward seeing them as vital partners with unique insights and lived experience.
Sandrine’s belief in this philosophy was soon reinforced by personal tragedy and resilience. In 2020, she took a decisive step forward by enrolling in the EUPATI Patient Expert Training Programme. Today, Sandrine leads Patient and Public Involvement (PPI) efforts at the Luxembourg Institute of Health, where she champions the integration of patient perspectives into research.
Our conversation explores Sandrine’s journey in patient involvement from how it began to how it has evolved. Let’s hear her story.
Could you share your story with us?
I’ve known about EUPATI since its early days, in 2012. From the beginning, it opened my eyes to a new way of thinking about patient, not just as subjects in research, but as partners who bring invaluable experience and insights.
Later, my personal journey deeply confirmed the importance of this philosophy. In 2013, I lost my partner from glioblastoma, and a few years after, in 2017, I was diagnosed with breast cancer myself. These experiences made me realise how crucial it is to include patients fully in research: to listen, collaborate, and respect their voices.
Motivated by this, in 2020, I decided to follow the EUPATI Patient Expert Training Programme, which gave me the knowledge, tools and confidence to promote meaningful patient involvement in research. I quickly applied these learnings in practice to help integrate patients’ voices and perspectives within the Luxembourg Institute of Health (LIH).
Today, I’m proud to lead PPI efforts at the LIH. Every day, I strive to build bridges between researchers and patients, believing deeply that working together makes research more human, relevant, and meaningful.
It’s a personal mission, shaped by both my life experience and my professional journey. I’m truly grateful to EUPATI for opening my eyes and giving real meaning and values back to my work.
How did you hear about the EUPATI Patient Expert Training Programme?
I heard about the EUPATI Patient Expert Training Programme right from the start, back in 2012. At that time, I was already working at the Luxembourg Institute of Health, focusing on making research understandable for the general public.
When I discovered EUPATI, it immediately caught my attention. It was exactly what I had been missing: a concrete way to involve patients more meaningfully in research. It opened my eyes to a whole new approach to science communication and patient engagement.
That’s why, a few years later, I decided to follow the training myself.
What were your personal highlights/ core memory of your training?
My core memory of the training is definitely how it all happened during COVID in 2020. Normally, there are four days of face-to-face meetings, but in my case, everything was online.
To be honest, I was really nervous. I love human contact and I couldn’t imagine spending four full days behind a computer screen — I was sure I was going to hate it!
But in the end, I was pleasantly surprised. The way the online sessions were organised was really dynamic and interactive. Despite the distance, I felt connected, engaged, and fully part of the group.
The funny thing is, we got to know each other’s faces very well, but not our heights! So when I finally met some people from the cohort in person later on, I was really surprised. It was all: “Oh wow, you’re so tall!” or “Wait, I thought you were shorter!”
It made those real-life meetings even more fun and memorable.
Did you feel supported when doing this training? Did you build strong connections within the cohort? Does this continue today?
Yes, I definitely felt supported during the training. Ingrid Heyne was amazing — she kept us all motivated, especially during the more difficult modules. Her encouragement really helped me stay focused and keep going.
The trainers were also fantastic, knowledgeable, approachable and passionate about what they do.
And of course, the connections within the cohort were really strong. We all shared this unique experience, and even now, we still keep in touch. Every time we meet at an event or a conference, it feels like we just saw each other yesterday!
What I also love is that almost everyone from the cohort is still active and dynamic in the field. It’s so inspiring to see how committed people are, even after the training.
Can you share a core memory / experience you’ve had since joining EUPATI?
The most incredible moment was when all the EUPATI National Platforms (ENPs) rocked the stage together at the EUPATI annual assembly.
Filippo Buccella and I had pumped up the national platforms to come forward and show off their activities and the amazing diversity of all 24 platforms. It felt like a Eurovision contest: ENP Finland, ENP Ireland, and so many more, all shining bright!
The energy was incredible, the pride was huge, and the crowd loved it. It was one of those unforgettable moments that really stuck with everyone lucky enough to be there.
Do you have any advice for people looking to join this programme?
My advice for anyone thinking about joining the EUPATI Patient Expert Training Programme is: go for it!
It’s an amazing opportunity to really understand how patients can shape research in a meaningful way. Be ready to learn a lot, not just about research but also about teamwork and communication.
Don’t worry if it feels overwhelming at first – Ingrid Heyne is there! the community is supportive, and you’ll find your place step by step.
Most importantly, stay curious and open-minded. This training can truly change how you see your role as a patient expert and make a real difference in healthcare.
How has this experience translated into your current work?
This experience has had a huge impact on my work today. Thanks to the EUPATI training, I didn’t just learn what patient involvement means, I truly understood how to put it into practice.
It gave me the tools and confidence to bring Patient and Public Involvement (PPI) into my organisation. Today, I lead PPI activities at the Luxembourg Institute of Health, building bridges step by step between researchers and patients.
The training also inspired me to co-found the EUPATI National Platform in Luxembourg. For me, it wasn’t just theory: it completely changed how I approach my work and how I see my role in research.
Any other reflections are welcome!
Looking back, I’m really grateful for my journey with EUPATI. It’s more than just a training: it’s a community that empowers patients and changes how research is done. What stands out most for me is how it helped me see patients not just as study subjects, but as real partners.
EUPATI opened doors for me, gave me confidence, and inspired me to take an active role in health research in Luxembourg.
I’m excited to see where this movement goes next, and I encourage anyone interested to get involved – it’s something you won’t regret!
Date posted: June 26, 2025
Categories: Uncategorized
