Digital information platform for those affected

When a child is diagnosed with cancer, the life of the whole family changes. From one day to the next, both those affected and their environment are suddenly confronted with completely new and very stressful challenges. There are many unanswered questions and fears. And even after they have been cured, survivors may still have uncertainties to worry about due to the risk of late effects, especially when it comes to multidisciplinary follow-up care, which combines medical, psychosocial and social security aspects.
 

There is still no digital contact point in Switzerland that provides people with important information and services about life with and after childhood cancer. In the field of childhood cancer, Switzerland has many actors who are both active and very committed, but those affected often cannot benefit from the available knowledge, tips or resources. Why? Sometimes they are simply not available in digital and/or bundled form and it is often the case that access cannot be guaranteed at all times. Childhood Cancer Switzerland wants to close this gap in care and supplement the regional and mostly analogue offers with a digital interactive information platform.
 

«The project is attracting great interest both from those affected and from local organisations,» says Birgitta Setz, CEO of Childhood Cancer Switzerland, explaining: «Access to a central and reliable source of information at all times, that focuses on the patient journey, from diagnosis through treatment to lifelong follow-up care, represents considerable added value for all stakeholders. The umbrella organisation plays an important and supportive role in this scenario as a service provider and hub in the childhood cancer ecosystem.»

Focus on those affected
The extensive project, which is based in the area of self-help and follow-up care, was launched in the summer of 2021 in collaboration with Elise Pelletier Rey, our external project lead. After an initial analysis, several workshops were carried out with a broad-based working group. All participants came from the direct professional or volunteer environment of families affected by cancer and survivors, thus ensuring different perspectives were incorporated into the project. First, the challenges and needs of the target groups as well as the critical moments along the patient journey were highlighted. Based on the findings, we developed a user-oriented concept based on three interconnected pillars:
 

Good to know:
The information platform compiles interesting facts and provides support for affected families, survivors and those close to them on topics such as getting help, mental health, social relationships, education, employment, autonomy, rights, finances and much more.
 

Questions & answers:
The information platform enables those affected to put their questions to experts online, anonymously and free of charge.

Networking:
The information platform provides useful contacts and addresses throughout Switzerland on the subject of childhood cancer.
 

With the information platform, Childhood Cancer Switzerland focuses on the affected families, survivors and those close to them, with the aim of providing them with reliable information and orientation at every stage of the patient journey. Childhood Cancer Switzerland is planning on developing the project in individual stages in cooperation with experts, partners and relevant stakeholders and taking on a central role as a service provider. Access to a considerable national and international network is an essential basis for this ambitious project.
 

Would you like to volunteer to help with the information platform or share your experience as an affected family or survivor? We look forward to hearing from you. Please contact Birgitta Setz at birgitta.setz@kinderkrebs-schweiz.ch.