The voice patients matter. This is, of course, also true for young patients and their parents. Patients know how it feels to go through the shocking news of a cancer diagnosis, a rough treatment journey (even when everything goes well or as planned) and to forego all the reassuring habits they once took for granted.

This is why KickCancer is setting up a “Patients Advocacy Committee”: in order to structurally empower the voice of young patients and their parents and thereby contribute at improving the quality of care and advocacy for paediatric cancer patients in Belgium and in Europe.

KickCancer’s Patients Advocacy Committee is conceived in three layers:

• Expert patients – who are selected after a recruitment phase and completed a specific training (more on this below).

• Regular patients – who accept to participate in focus groups discussions or answer surveys.

• Informed patients: patients who want to receive our “patients-specific” newsletters.

The pool of ‘Expert Patients’ completed a professional training designed in collaboration by the PEC (Patient Expert Centre), allowing them to elevate their patient’s experience to a “patient expert” level. With this training they learned how new treatments are developed (evidence-based research) and how patients can meaningfully express their point of view with researchers, pharmaceutical companies or authorities.

Those trained ‘Expert Patients’ will therefore be able to play a central and level playing field role in discussions about paediatric cancers in regulatory discussions or in clinical working groups by representing the voice of the patients. They can also offer peer-to-peer support to newly diagnosed patients and their families by providing them with a professional guidance.

The first certified “Expert Patients” of KickCancer’s Patients Advocacy Committee graduated on December 2^nd, 2021 and KickCancer is looking forward to kicking off exciting projects with them.

Let’s give a voice to our newly graduated experts…

Sam: “The PEC provides a 360° view on the different dimensions of illness and patient representation. It arms the participant with relevant knowledge, background, vocabulary and confidence to engage in meaningful discussions on a broad range of topics (medical, emotional, legal, interpersonal, social...). Furthermore, the program introduces the participants to the various roles in patient representation, allowing the participant to identify his/her calling, based on personal interest”

Charles: “Even if we were far from each other because of the sanitary circumstances, it was with joy that I discovered this community of people committed to this fight alongside of KickCancer”

Ann: “I am not a person who easily accepts the harsh reality of paediatric cancers. This is exactly why I feel immensely connected to KickCancer, their fighting spirit and constructive attitude to contribute to identifying solutions to truly improve the situation of children with cancer”.

Mariangela: “I am really committed to promoting patient empowerment and to playing an active role as patient at a European level”

You want to find out more about our collaboration with the Belgian Society of Pediatric Haematology Oncology (BSPHO)? Click here.