Meet the Leader from CCI Europe!

In this interview, we meet Psychologist, project manager and patient expert Hannah Gsell from Childhood Cancer International – Europe.

Why did you join PanCareSurPass?

I am already working for CCI Europe in the PanCareFollowUp project as a project manager. There it is about the creation of a good and person-centered long-term follow-up (LTFU) care for survivors. Part of this is also the integration of the SurPass into this type of LTFU. Many survivors throughout Europe still lack good and reliable long-term aftercare, but above all the necessary knowledge about possible late effects and the need for lifelong follow-up care. That is the reason why I am in this project. I want to help survivors all over Europe to get the follow-up care and education about what they need for it, so that they can take care of their health in a self-determined way.

Explain your organization and your role in PanCareSurPass.

CCI Europe is the European branch of Childhood Cancer International (CCI). The Board of CCI is interlinked with the CCI Europe Regional Committee fostering a strong partnership and exchange of knowledge across the different geographical scopes. CCI Europe is the biggest pan-European childhood cancer parents’ and survivors’ organization. It represents childhood cancer parents´ and survivors´ groups and other childhood cancer organizations.

CCI Europe reunites all the CCI European members organizations: 67 member-organizations in 34 countries to:

• share knowledge and experiences
• offer education and disseminate information
• advocate for the rights and needs of childhood cancer patients and survivors;
• raise awareness about childhood cancer
• actively engage and partner in research and development
• provide assistance and guidance to establish local/national organizations and groups

I have two tasks within the project: first, I am the project manager for CCI Europe. That means I have to keep an eye on all the tasks CCI Europe is integrated in and then either do them myself or integrate someone who can do it 😊

My other task, which often also mixes with the first one, is that of Patient Expert. This means that I am a survivor myself with a professional background (psychologist) and so within this project I can bring up the needs and wishes of survivors and ideally make sure that they are taken into account.

Why do you think PanCareSurPass is an important project?

When the SurPass is finally implemented, it will ensure that survivors are self-determined and well-educated about their own health, pre-existing conditions, late effects, risks, etc., and can organize their long-term follow-up and health care. PanCareSurPass ensures that this concept is “tried out” and implemented in various settings and that a manual is produced at the end so that as many clinics as possible can integrate this concept into their follow-up care. That is why this project is so important.

What makes this project unique for you?

Oh, there are many things, but I think, quite apart from the task that this project has, the Consortium is something very special. Many people, from all corners of Europe and above all with the most different professions, HCPs, IT experts and most important 😉 Survivors are represented here and work together to finally bring the SurPass to reality!

What do you hope this project will achieve?

The implementation of the SurPass in the participating partner clinics, which will thus be a role model and motivation for all other clinics in Europe to also integrate it into their follow-up care.  The result would be independent, well-educated survivors, who can go through life more confidently 😊

What’s the biggest challenge for your organization in PanCareSurPass?

Well, for one thing, it’s often difficult to keep track of all the tasks, especially so remotely. The pandemic has forced us to sit in our home offices and work remotely on this huge project. I’m looking forward to when we’ll have some meetings in real life again. Also, this project is very technical, so keeping up with it all the time is a bit of a challenge 😉

What’s the most fun thing for you in PanCareSurPass?

Simply everything!! Working with all these different people, the subject itself, I couldn’t pick one thing that I enjoy the most.

What’s the most important benefit of your participation in PanCareSurPass?

Through our participation in the project, on the one hand, the needs and wishes of survivors are represented and, on the other hand, we can make available our European-wide network of patient organizations, which provide much more knowledge. We represent survivors within this project and can bring the results as close as possible to what survivors need and want.

What else do we need to know about your organization or is there anything else you want to share?

Get informed, ask questions, talk about the project and the SurPass! When people hear that this tool is something survivors need and want, the motivation to implement it increases 😉