Empower young patients to increase quality of care
September is Childhood Cancer Awareness Month, a time to highlight that despite their young age, children can also be diagnosed with cancer. However, it would take more than one month a year to underline critical needs of young patients, in search of more efficient and adapted treatments.
Today, young patients with only 1 in 2 chance of surviving, are still treated with the same combination of drugs as 30 years ago. A situation where you would expect that the standard of care is rapidly evolving. But it isn't.
Childhood cancer is a blind spot. Some cancers offer a good return on investment for drug developers, but paediatric cancer doesn’t. To fill in the blanks the Anticancer Fund devotes specific attention to it: we finance clinical trials that investigate better drugs and treatments for children and young adults. We also provide individualised information on cancer therapies through our service My Cancer Navigator to parents of children with cancer, or to young patients of legal age. To boost our impact, we developed a strategic collaboration with the KickCancer Foundation, the mission of which is to cure every child’s cancer.
The Anticancer Fund and the KickCancer Foundation are aligned against child cancer, a common enemy both organisations are willing to fight. As a result, it should come as no surprise that we work together on several projects.
Together we can achieve more
KickCancer is a young Belgian foundation active at the European and Belgian level to finance and stimulate innovative research for young patients with cancer. KickCancer pursues its mission by financing research and advocating structural changes in regulations, working ways and increased collaboration between all the important players, pharma companies, authorities, researchers, doctors and other patient organisations, to improve the future of young patients with cancer.
KickCancer and the Anticancer Fund are working together on topics like advocacy for a more efficient legal framework, that will deliver higher quality treatments for patients in a sustainable fashion and patients’ empowerment. Both organisations strongly believe that qualitative information must be accessible to patients and that they are entitled to challenge their practitioner and ask questions about their treatment options.
The voice of the patient
The voice of patients matters. This, of course, is 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.
It is only by listening to hundreds of patients, by conducting surveys among them, that we can grasp where more tailored information is needed, successes are achieved or where failures are repeated over and over again. Policies, regulations and care need to take the patients’ point of view into account in order to be more effective, which is why young patients and their parents have an active role to play.
There is a growing trend to involve patients in decision processes in order to take their experience into account and to rely on fact-based information about what patients really want or need.
For instance, organisations take better decisions on trial design, treatment pathways or communication about the illness or treatments when they actively consult patients in an early phase.
This is why KickCancer is setting up a “Patients Advocacy Committee (PEC)”: 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.
The patient as the expert
The Patients’ Advocacy Committee will allow to provide fact-based information on what patients really want/need by creating a pool of patients willing to share their experience and to participate in surveys and focus groups that could be initiated by stakeholders when a specific question arises in relation with the patients’ point of view.
This Committee will also create a pool of ‘Expert Patients’ who will have received a professional training designed in collaboration by the PEC (Patient Expert Center), allowing to elevate their "patient’s experience" to a “patient expert” level. During this training they are learning how treatments are developed and how patients can meaningfully convey their point of view to researchers, pharmaceutical companies or authorities.
Those trained ‘Expert Patients’ will play a central and level playing field role in regulatory discussions, hospital committees or in clinical working groups by representing the voice of the patients. They will also offer peer-to-peer support to newly diagnosed patients and their families by providing guidance, helping to analyse information available on the internet with a critical eye, discussing about enrolling in a clinical trial or even the relevance of a second opinion.
The first certified “Expert Patients” of KickCancer’s Patients Advocacy Committee will graduate in October 2021. The Anticancer Fund is looking forward to collaborating with the Patients Advocacy Committee.
If you are interested in joining KickCancer’s Patients Advocacy Committee, please let us know.