Here is why Longfonds (the Dutch Lung Foundation) have decided to become EPAP partners:
Longfonds believes that people with a lung disease have a unique perspective on the impact of having a lung disease. Patients have specific knowledge which researchers, doctors, nurses etc. don’t have.
Longfonds believes that if the opinion of patients is more often asked and used we can make a huge difference to how healthcare and related policies are delivered nowadays and in the future.
Of course everybody who has a lung disease has experience but we also believe patient influence can be most effective if their work is of high quality. To speak on behalf of other patients requires specific experience and skills. You need to be able to think broader than your own perspective and have to be able to put yourself into somebody else’s shoes. Good communication skills are essential as well.
Therefore we have a group of patient expert volunteers who represent us in healthcare projects, policy making and research. Members of this group are especially selected and can follow training programmes. They have their own online community where they can interact and learn from each other and Longfonds staff.
The EPAP programme, especially the Dutch translation, is a great addition to our current training programme. Most of the training we offer is normally at our office but e-learning is definitely something we would like to explore more.