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SIRIC Curie's health democracy mission - in practice

10/11/2024
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Our concrete actions and working topics
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Our actions

  • Participation of all actors in SIRIC Curie governing bodies 

Since 2011, we have included patient representatives* in all of our governing bodies along with researchers, doctors, and the direction of Institut Curie (Directors of both the Hospital Complex and the Research Centre). 

In the frame of this 3rd endorsement, the historic group, made up of 4 patient representatives, takes part in the orientation and implementation of SIRIC-Curie's strategy within these governing bodies. Notably, relapse, the central theme of our new scientific project, was suggested by one of the group members.

  • Work on the representativity of patients

The lived experience of sickness and the care pathway are different for every patient and caregiver. In order to amplify the diversity of their voices, we are putting different actions in place: 

- Conception of questionnaires collecting opinions or expectations and needs of patients on a specific subject

- The organisation of events open to everyone 

- Creation of the SIRIC community : an extended group of patient representatives and family members with an interest in research. It's currently being created and will include 20 to 30 patients once established. 

  • Creation of meeting and dialogue moments

The organisation of dedicated moments for discussion is the first step towards the establishment of interactions between patients, caregivers, researchers and clinicians. They can take the form of webinars, local or national meeting days, or discussions (in the form fo workgroups for example). They often have multiple roles: to inform patients and their friends and family (in particular on research evolution), improve the link between the different actors and permit the emergence of ideas for projects or collaborative actions. 

  • A tailored support service for researchers and patients 

We propose to accompany Institut Curie teams involved in research and also patients and their family members who wish to participate in the establishment and unfolding of collaborative projects and interactions with an informative or consultative role.

We facilitate the connection between different actors and provide resources, tools and a work environment that ensure a benefit for all of the involved parties. This support is on a project-dependant case by case basis according to the resources and constraints of all parties. We are particularly attentive to ensuring everyone's voice is heard to avoid paternalism and tokenism. 

Examples: identifying collaboration opportunities, participation in responses to call for tenders**, reviewing protocols and help with research project submission. 

Our work topics

Our work topics are the risk of relapse, treatment resistance, metastasis, which are the central research themes of the 2nd and 3rd SIRIC Curie endorsements. Health data, the stakes linked to their secondary use, artificial intelligence, access to innovation and treatment side effects are also research themes. This list isn't exhaustive and we remain attentive to all questions and problems raised that are linked to cancer research

How to take part ?

You're a patient, ex-patient, or caregiver and you're interested in joining the SIRIC community ? 

You're a researcher or clinician and you're interested in collaborations with patients ?

You have questions or wish to know more about our actions ?

Contact us : democratie-sante.siric@curie.fr

 

*We include in the term patient representative anyone affected by cancer whether as a patient, family member, caregiver. 

** Research in France generally works via competitive calls for tender for funding new research projects.