In this interview, we meet Anita Kienesberger from CCI Europe in Vienna, Austria.
Please introduce yourself and share with us why you joined PanCareFollowUp.
My name is Anita Kienesberger, I joined the project in my function as chair of CCI Europe, the European umbrella organisation for parent-, patient-, survivor- and childhood cancer organisations.
For me the reason to join was very clear from the beginning: survivors need better long-term follow-up care and I am convinced that PanCareFollowUp is the project to achieve this.
Explain your organisation and your role in PanCareFollowUp.
Childhood Cancer International Europe is the European Branch of the largest umbrella for childhood cancer organizations worldwide, Childhood Cancer International (CCI).
CCI Europe represents the interests of parents, patients and survivors at the European level, with the goals to improve medical and psychosocial care for children and adolescents with cancer, improve the quality of survivorship and eliminate inequalities in treatment and care.
In PanCareFollowUp, CCI Europe‘s patient advocates provide the patient-perspective in several work packages to make sure that the needs of survivors – also in terms of quality of life – are met by the outcomes of the project.
Why do you think PanCareFollowUp is an important project?
Because it will ensure that survivors all over Europe can have access to standardised, a state of the art long-term follow-up care which has been developed in a collaboration by follow-up care specialists and patient-organisations.
What makes this project unique for you?
What makes PanCareFollowUp unique from other European projects is that it brings together all critical stakeholders – also patient advocates – ensuring a PPI approach. Moreover, it is a research project with outcomes directly translated to care.
What do you hope this project will achieve?
We hope that this project will achieve a better understanding among health care professionals, politicians and the public for the needs of survivors, beyond medical necessities: it will achieve more awareness for psychosocial issues and for what it means to live with having had cancer.
And then of course we hope that the outcomes which PanCareFollowUp is developing in the four participating centers now will be picked up by all other pediatric oncological centers in Europe.
What’s the biggest challenge of your organisation in PanCareFollowUp?
The current COVID-pandemic is a huge challenge for staying on track with the deliverables of the project.
Beyond COVID, we see the biggest challenge for our organisation in providing enough women- and men-power in terms of our volunteer patient-advocates in order to fulfill all our tasks.
What’s the most fun thing for you in PanCareFollowUp?
Working together with this unbelievably committed, lovely, funny, bright and open community!
The funny in-betweens, of course! The coordination team is very successful in having constructive, interesting meetings with very diverting and fun elements to keep all of us attentive – even in this virtual world.
What’s the most important benefit of your participation in PanCareFollowUp?
The most important benefit for us as an organisation is to be an active part of this community.
The most important benefit of this project for the upcoming “generation” of childhood, adolescent and young adult cancer survivors is that they will not need to fight so hard for their follow-up care and thus will be free to focus on other topics which are important to be dealt with regarding survivorship care, because within PanCareFollowUp we managed to take care of this important issue already.