Patient advocacy groups in Europe are evolving at a fast pace. They are becoming more effective and professional advocates for the patients and conditions they represent, while continuing to help their members by breaking through the barriers of isolation experienced by many people with serious and debilitating conditions.
There is a huge diversity of groups, from those with broad geographical reach, representing millions of patients, to others which are local in nature and run by a small number of committed individuals. Regardless of size and experience, the entire patient community is becoming more aware of its ability to influence and shape the healthcare system so that it meets their needs better. And they are learning to use this influence more effectively.
Across healthcare, it is arguably patients whose engagement and perceptions have been changed most dramatically by information technologies, such as the internet, forums and social media. These platforms have eroded the traditional asymmetry around access to information between industry, medical professionals and patients. They have enabled individuals, families and carers to become better informed and educated about their conditions, the clinical development and commercialisation process, and the options available. In Europe, initiatives such as EUPATI and the EURORDIS Summer School have been instrumental in developing patient experts who are able to converse on an equal footing with researchers and physicians about clinical trials, health technology assessments and Real-World Evidence studies.