Democracy in health
Cancer research and you
Research can sometimes seem far removed from care for patients and their loved ones. It is however crucial that this is not the case. Bringing scientific and medical communities closer to patients and their representatives is essential. It’s not an easy task but the mutual benefits can be significant: research in line with needs, acceleration of innovation, better understanding of the disease and of issues linked to innovation, improved respect of individual rights…
Committee of patient representatives
Since the beginning of 2017 SIRIC has been accompanied by a committee of patient representatives who are implicated at all levels of the SIRIC program:
- Management via its participation in the SIRIC steering committee with equal voting power to that of researchers and clinicians (3 votes per category)
- The committee exchanges regularly with representatives of the 3 scientific research programs of the SIRIC
- Communication actions
Development of health democracy
We have created a workgroup dedicated to health democracy with the objective of arriving at concrete actions:
- Communication actions destined for the public or for research and care stakeholders
- Co-construction of research projects
- Reflections on improving practices related to integrated cancer research…
This workgroup is led by Dominique Stoppa-Lyonnet, head of the genetics department at Institut Curie and professor at Paris-Descartes University, and is composed of the committee of patient representatives, 3 clinicians, 3 researchers and the SIRIC management team. Other people from Institut Curie are regularly invited to participate in meetings based on their expertise.
Since January 2018 the group has been conducting reflections on topics such as access to therapeutic innovation and communication in the context of resistance to treatment that has already led to the formulation of a number of recommendations.
Development of an eco-system to foster exchange
To facilitate discussions between the different stakeholders be they patients, clinicians or researchers we’ve put a few tools in place:
- A bi-directional coaching system for each program
- Guiding the patient representatives towards training tools and courses outside of Institut Curie
- Direct interactions between the actors of the scientific programs and the patient representatives
- Communication tools to ease information sharing with the general public and / or association representatives
"La démocratie sanitaire est une démarche qui vise à associer l'ensemble des acteurs du système de santé dans l'élaboration et la mise en œuvre de la politique de santé, dans un esprit de dialogue et de concertation.
Faire vivre la démocratie sanitaire nécessite de développer la concertation et le débat public, d’améliorer la participation des acteurs de santé et de promouvoir les droits individuels et collectifs des usagers"
Définition donnée par les Agences Régionales de Santé, ARS, chargées de sa mise en œuvre par la loi HPST de 2009 à travers la Conférence Régionale de Santé et de l’Autonomie, CRSA, et de leurs déclinaisons départementales avec les Conférences Territoriales de Santé
