Supporting patients means working hand in hand with those who know the journey best. This is a story for patients, by patients.
At KickCancer, we turn their experience into impact for future patients by involving them in advocacy projects, research design, peer support, and the creation of new tools to improve care and quality of life.
The voice of young patients and their parents matters. Patients know firsthand what it feels like to receive a cancer diagnosis. Their experience of the treatment journey gives them unique insight into where we fall short today - and how we can do better.
Organisations make better decisions on policies, regulations, clinical trial design, treatment pathways or communication when they actively consult patients or involve them in the process. Luckily, there is a growing trend amongst key stakeholders to take patients’ experience into account and rely on fact-based information about what patients really want or need.
In 2021, KickCancer established a “Patients Committee”, marking its transformation into a truly patient-led organisation. The Committee includes both parents of young patients and cancer survivors, and contributes to improving the quality of care and advocacy for paediatric cancer patients in Belgium and in Europe.
KickCancer’s Patients Committee operates across three levels of involvement:
As a patient, you may want to stay informed about our advocacy work, research, and projects — without necessarily taking an active role in the Committee.
Subscribe to our patient’s newsletter
Engaged patients agree to contribute to surveys or focus group discussions. KickCancer relies on their input to inform specific topics and improve research and care through a fact-based understanding of the patient experience.
Becoming an engaged patient only requires a limited commitment in terms of hours but it really helps KickCancer improve its understanding of the Belgian landscape of paediatric cancers thanks to their input.
Apply to become part of our Committee
Expert patients are patients who have been recruited for their skills, have completed a specific training and are willing to devote a regular amount of time to KickCancer’s advocacy activities.
This professional training, designed in collaboration with the PEC (Patient Expert Centre), allows those patients to elevate their patient’s experience to a “patient expert” level: they have 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. This training enables them to play a central role in regulatory discussions about paediatric cancers or in clinical working groups by representing the voice of the patients.
Expert patients have also been trained to provide new patients with peer-to-peer support.
If you’d like to involve one of our trained patients in your project, survey or focus group, reach out via the form below.
