Rights, preferences, needs and expectations of patients and citizens can only be respected and addressed if they are well understood. As such, a continuous, systematic and formalised dialogue between patients, citizens and policy makers is required to ensure ethical and socially appropriate cancer prevention, diagnostics, treatment and care. Relying on donations and project-based funding is not a sustainable way to ensure patient involvement and representativeness in policy. Patient organizations need long term, structural support to fulfil their role as patient representatives and support network in order to deliver the best possible service and to play their role as a professional representative of their disease-specific community. Inequalities can only be tackled if they are properly identified. This requires the definition of appropriate determinants fit for (inter)national comparison and extension and linkage of good quality data registries for cancer that allow the monitoring these inequalities.