June 28, 2022


Dystonia Europe attended the EPF (European Patient Forum) Congress held in Brussels, Belgium 23rd and 24th of June. Dystonia Europe is a member of EPF,

Rau Ganesco, Treasurer of EPF gave an opening speech on behalf of Marco Greco, President of EPF, who could not attend the Congress. Next Stella Kyriakydes, European Commissioner of Health gave us insight in digital information of health care. She spoke about the European Data Health System. Health care needs to be more efficient and we need better health care across the EU.

There were two days of learning and exploring ideas and solutions within AI (Artificial Intelligence). The focus was on good practice in patient empowerment and involvement and how to move forward on the much-needed policy commitments in this area, gaining a greater and better understanding of the knowledge and expertise that patients bring to health systems.

There were nearly 300 participants, mostly from patient organisations, but also from other stakeholders. Some participated on-line, however the connections made during coffee breaks, lunch and dinner played a vital and important part of the conference with extended learning and discussion of ideas. This cannot be done to the same extent online. Discussions and further work will continue online.

AI is being used today within health care and it is believed that it will further improve health care in  the future. There are many aspects that need to be taken into consideration so that AI is developed in a way that benefits the patients and the medical system. Training of healthcare providers is an important aspect, but also information and training of patients is equally important.

More information enables patients to be aware, distinguish between options and be a part of their treatment process. It was stressed at the Congress that it is very important that patients, for example through patient organisations, voice their opinions today on the impact of AI in the future!

Collecting data for studies is important. The Health Minister of France gave a presentation on the role of AI in the French healthcare system. There are many issues to be considered such as ethics and cybersecurity.

The use of artificial intelligence in healthcare can be described as the application of machines learning algorithms and software to imitate human cognition in the evaluation, presentation, and comprehension of complex medical data. AI programs are applied to treatment protocol development, drug development, personalised medication, and patient monitoring.

Merete Avery, Operations Manager Dystonia Europe 
Dr David Novillo Ortiz, WHO European Region  and Programme Manager Digital Health,
Dr Mélodie Bernaux, French President Ministry of Health