I think it is a great idea that AYA cancer survivors can help and be a part of a project that would help other survivors (and patients) with the important aspect of survivorship – understanding life after treatment and the possible effects of their treatment. Thus, my involvement in helping to shape the STRONG-AYA portal was to bring in the AYA perspective: What and how do we need to see? What matters to us? What feels useful – not overwhelming? I can say that one of the most meaningful parts of co-creating the portal with a great team and wonderful people from Maastricht (and others) is ensuring that the voices of long-term AYA cancer survivors are never overlooked, because I believe we can provide useful insights to this subject.
Being part of the portal development process at this early stage means constantly asking: what and how would make this meaningful for an AYA patient? It is never enough to just show data – it is about what kind of information and how to show the data that actually supports a young person trying to make sense of life after a cancer diagnosis. The goal is always to design a space that informs without overwhelming, and that offers clarity without clinical coldness.
When you’re an AYA patient, especially navigating survivorship, you need tools that feel like they’re built with you, not just for you.
Trying to identify what kind of data actually matters in the long term and how survivors might want to interact with it is a key point here. We have to look beyond just medical metrics… It is about quality of life, mental health, relationships, and life goals. We have to ask the questions on how data and, thus, the portal can help someone navigate work, fertility, or future planning after treatment ends.
I personally am involved in STRONG AYA because I believe that AYA cancer care must go beyond survival. It should be about quality of life, long-term wellbeing, and making sure young people feel seen, supported, and understood – not just during treatment, but for years after. I also believe that what matters to AYAs (mental health, fertility, late effects and others) deserves to be measured, valued, and especially, acted on.
I also like that this project values co-creation in a real, meaningful way. As someone who’s contributed from the patient perspective (not just in this case), I’ve seen how ideas change when lived experience is truly listened to – not just acknowledged, but integrated.
One of the most important aspects of the life of cancer patients and survivors is that every AYA, regardless of where they live in Europe, has access to care that is not only age-appropriate but also life affirming. It is also important to recognize that cancer during adolescence and young adulthood strikes at a time of transition (education, careers, relationships, identity), so we have to realize that AYAs deserve more than survival – we/they deserve quality, opportunity, and a voice in our/their care.
Strong Aya