What is health democracy ?
Democracy in health is a complex notion with numerous definitions.
The French Regional Health Agencies (ARS) define it as "an approach associating all of the health system stakeholders in the elaboration and establishment of health policy in the spirit of dialogue and concertation".
The development of this approach is based on the promotion of individual and collective user rights on the one hand and on these users' participation on the other hand. This approach began in the care domain, the patient became an actor in their own right in the care pathway and this has recently been extended to other spheres in the health system like teaching and research.
There are different types of interactions between the actors (in our case the care and research teams, family and friends and patients), defined by the degree of implication:
Here, we're using terminology from the Montreal model (Pomey et al., 2015).
Patients can also be involved in one, multiple or all of the steps of the process whatever the research type (clinical, translational or basic). This being said, their participation is most easily identified for clinical and translational* research where they already play a key role.
*Translational research is the link between basic and clinical research. Basic research aims to understand mechanisms at the origin of the disease or its evolution, translational research tests the application of these discoveries on models to define new therapeutic strategies. Clinicians and researchers are involved and their objective is to transfer scientific discoveries to medical applications for patients. Clinical research is to evaluate these strategies in humans.