Health democracy within SIRIC Curie
Within SIRIC Curie, this approach is based on a specific organisation, experience in collaborative work with patient representatives since 2011 and clear objectives.
Our organisation
Since its’ creation in 2011, SIRC Curie has wished to involve patients.
During the first certification (2011-2015), one patient representative was invited to participate in the project in all its dimensions. This patient representative was a member of the management bodies of the SIRIC.
Building on this first valuable experience, SIRIC Curie has established a wider task force dedicated to developing health democracy for its 2nd (2018-2022) and 3rd labelling (2023-2027).
This group includes 4 patient representatives who have participated in previous SIRIC programs (historical group) and who are members of SIRIC governance bodies. It relies on a panel of clinicians and researchers who are involved depending on the projects. It is headed by Dominique Stoppa-Lyonnet and coordinated by Elisabeth Hess and Aurélie Garcin with the support of Sergio Roman Roman. With the aim of increasing patient and carer representativeness within the SIRIC, a wider community of patient representatives is being formed. Together, patient representatives bring their experiences of the disease and their expertise to the SIRIC. They are valuable members of the program.
Our convictions
Since the first certification, we have been committed to fostering connections between patients, researchers and clinicians. We are convinced that collaborations arising from these connections improve the relevance, effectiveness and quality of the research conducted within the SIRIC but also beyond. Moreover, they contribute to greater transparency and better understanding by the patients and their relatives of the research process, enabling a trusting relationship to be built.
These convictions are based on several published studies but also on our past experiences.
Our objectives
- Informing patients and their families about research and health democracy
- Making the voice of every stakeholder in cancer research heard.
- Developing collaborations and project co-construction
- Implementing concrete actions that could benefit patients/families