Patient advocacy groups play an important role in supporting patients with chronic diseases and promoting better care. The EU-PFF Charter for better care was developed as a patient–physician initiative aimed to gather perceptions from European Idiopathic Pulmonary Fibrosis (IPF) patient advocacy groups regarding inequalities and unmet needs in IPF care
In total, 11 European patient advocacy groups were interviewed regarding the care of patients with IPF in their countries. Interview feedback was presented to a Working Group including patient advocacy group representatives and IPF specialists; key areas of agreement were developed into the European IPF Patient Charter.
The interviews identified five key themes that fed into the final Charter: the need for improved diagnosis, treatment access, holistic care, disease awareness and palliative care.
The final Charter was endorsed by patient advocacy groups and presented to 26 Members of the European Parliament in September 2014. This patient–physician initiative highlights the inequalities and unmet needs in IPF care across Europe, and demonstrates how this insight can inform the development of a Patient Charter, designed as a call to action for healthcare policymakers to drive improvement in European IPF care.