This Wednesday, February 15, 2023, more than fifty participants responded to the invitation of admedicum and the French patient organizations Corasso and Seintinelles, and gathered at the Cité Internationale Universitaire de Paris for this first Patient Engagement Meetup in the city, “les Rencontres de l’Engagement Patient“.
After the meetings in Berlin, Munich, Utrecht and Barcelona organized by admedicum, this event in Paris offered a new opportunity for patient representatives, patient experts, researchers and industry representatives to meet, exchange and discuss the needs and means to develop patient engagement, especially patient participation in healthcare research and innovation processes.
This first meeting started with a presentation by Dr Andreas Reimann, co-founder of admedicum, who advocated for early patient engagement during clinical development, patients, even before the clinical phase and right up to access to the new treatment. Dr. Meike Neukirchen, senior international patient engagement manager at admedicum, explained that early patient engagement allows for the development of patient-relevant datasets, clinical trial protocols tailored to the needs and expectations of patients and maximizes the value of patient engagement.
They were followed by Sabrina Le Bars, president and co-founder of Corasso, spoke about the reasons that led her and her “sister in arms” to create the French head and neck cancer patient association in 2014. Sabrina Le Bars described the late diagnosis of these cancers, which compromises patients’ chances of remission, and the persistent symptoms that should alert us. The president of Corasso also explained the missions of the organization, raising awareness of the public and caregivers to ensure an early diagnosis, support for research and care improvement and direct support for patients and caregivers.
Sabrina Le Bars concluded by mentioning the urgency of making progress for patients whose 5-year survival rate is less than 60%, an urgency that has led Corasso to participate in the Demain sans HPV collective and to roll out a massive awareness campaign for the general public and healthcare providers in the coming months.
Guillemette Jacob, co-founder of Seintinelles, took the floor to present the association, which aims to bring together researchers and citizens with the objective of producing research that is faster and closer to citizens’ expectations. Seintinelles relies on digital technology to create strong relationships between researchers and citizens, relationships whose basic principles are reciprocity, giving and giving back.
Based on the observation that when we do research together, we build a society, Guillemette Jacob has pleaded for the use of the word citizen instead of the usual patient. Using the word citizen is also justified by the fact that the French health system is based on solidarity and that participation in research is an act of solidarity, a citizen act, said Guillemette Jacob to conclude her speech.
As a prelude to the convivial moment that followed, a debate allowed many interventions around questions on patient engagement, obstacles and means necessary to its development. One of the most hotly debated questions was the need for training medical experts in co-construction with patients. This question opened interesting perspectives on the future of medical training and on the cultural differences in Europe in the care relationship.
As the participants appreciated the format of this first Paris patient engagement meetup, the organizers hope to be able to repeat the event and allow the development of relationships that nourish trust and give birth to common projects.
admedicum, Corasso and Seintinelles would like to thank all the participants present as well as those who were unable to join us due to the complicated travel context of the moment.