The key assets of EUPATI – the website, the Toolbox, and the Expert Training Course – will be maintained and developed, continuing to educate and empower patients for a more active role as partner in all aspects of medicines research and development.
Patients are more and more in the drivers seat and we have news from all over Europe on how patients are working with other stakeholders to redraw the lines of what and how is patient engagement.
When patients better understand how good quality clinical trials are performed and they can have a role in their design and conduct, serving to increase recruitment to clinical trials in Switzerland and Europe-wide. EUPATI materials can serve as the basis for training courses aimed at specific patient groups and contribute to the advancement of citizen science in general.
The processes of patient involvement in industry medicines research and development have evolved, but the evolution of frameworks, mechanisms, metrics and processes happens individually without much alignment and sharing.
EUPATI national activities in many of our local chapters – Ireland, UK, Austria, Italy
The stories of patients, families, partners, friends, scientists and health care professionals are quite compelling – and underline that we have a long way to go toward more systematic patient involvement across our health ecosystem. That can only be achieved through appropriate collaboration, commitment, and connection.
There were never enough of us activists, but we seemed to be wherever a politician was making a speech or opening a new neighbourhood centre or celebrating an event, etc. We were rarely quiet and respectful. We were constantly protesting, dying in the streets, planning disruptive events. Not only were there no treatments, there was no respect towards the people with the disease. Things have changed dramatically since then.