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EMA gathers the views of young patients

The European Medicines Agency (EMA) was invited to contribute to the EMPATHY Seminar in a session devoted to collecting views on a video and a questionnaire. The exchanges were very fruitful for the Agency which demonstrates the importance to involve young patients in the design of tools that are addressed to them.

EMA came to the EMPATHY seminar with the willingness to involve young patients in the development of their Paediatric Committee (PDCO) project. The objective was to consult the opinions of children and young people on matters related to medicines and clinical trials.

The discussions focused on two tools developed by the EMA/PDCO: a draft informative video and a questionnaire. The video showed the Committee’s activities and young patients had the opportunity to comment on it to help the Agency to further develop it. It emerged from the discussions that the video was considered too heavy and too complex. The group advised the Agency on how to make the layout more ‘friendly’ and less formal to capture the attention of a young audience.

The Committee’s questionnaire about medicine use and clinical trials also came under the young people’s review. They directly pointed out the need to split the current form in two different ones for clarity.

The debates provided useful feedback for EMA. The participants were happy to take part in this consultation and highlighted the importance of such early dialogues to ensure that EMA efforts are adapted to patients.

“The EMPATHY seminar was the ideal scene for such consultation as the audience was very diverse both in terms of nationalities and diseases.  The young patients were particularly vocal in expressing their thoughts on what works and what doesn’t. They were clearly interested in our work, it is very important for us to interact with them”, said Elin Haf Davies, European Medicines Agency 

Both EMA’s representative and the youth group agreed on the need for a continuous dialogue in this type of project.