Patients and citizens as partners in health research: what status?

Patient∙es participation in healthcare has been an international dynamic present for several years. France is at the origin of various initiatives (e.g. patient-partner-peer recruitment in healthcare institutions, patient participation in caregiver training) however it is further behind regarding patient inclusion in research particularly in the cancer field.

However, the Ma santé 2022 law explicitly calls for "involving users in actions to research and improve the safety and quality of healthcare provision". This desire to involve patients is reflected in the recommendations of the French National Authority for Health (HAS) on user involvement.

The French government is committed to ensuring the involvement of patients

The involvement of sick people in research in academic research is beginning to develop with the rise of participatory research and the interest of certain disciplines (SHS, epidemiology...) in the participatory approach.

In this context, the Groupe du 13 was formed in France around researchers and patient∙e.s interested∙e.s in patient involvement in research. After several online sessions, this first face-to-face day, on November 8 in Nancy, will aim in the morning to set out these contextual elements and present the state of research in France involving patients∙es., but also to bring together, in afternoon workshops, patients∙e.s and researchers∙se.s around three themes:

• Figures of patient∙es partners in health research: who are the patient∙es partners involved in health? do they present characteristic life stories , illness, commitment?
• Inclusion of patient∙es partners: how have patient∙es partners been able to participate in research, what difficulties have they encountered, what has facilitated their integration into teams, projects?
• How did patients∙ses and researchers∙ses interact with each other, and how did each other's knowledge (skills, knowledge, experience) come into play?

More information:
https://escape.canceropole-est.org/#/manifestation/subscription/23