Christian Saout, member of the College of the High Health Authority, launches a advocacy for structural transformation (and cultural) of the French health system. Weakened by the aging of the population, the explosion of chronic diseases and the lack of resources, its survival will, according to the author, require an unprecedented alliance with the patients themselves: by promoting individual expertise, experiential knowledge and by granting a real place to the patient-partner to “co-construct care”. The author specifies that he is speaking here in a personal capacity.
The evolution of the patient’s place in the health system is the result of intense social struggles that began in the second half of the 20th century, recalls Christian Saout. Supported by philosophers (Foucault, Illich) and militant movements (feminism, fight against AIDS with the slogan “Nothing for us without us!”), these demands have shaken up a medicine considered too descending. In France, this dynamic led to the General States of Health (1998-1999) then to the Kouchner law of March 4, 2002. This law institutionalized the “health democracy” by allowing approved associations to represent users in hospital and public health authorities.
The limits of the current model
Twenty years later, the observation is nevertheless nuanced. If the deliberative order (the presence of representatives on boards of directors or commissions) is well legally anchored, it shows signs of running out of steam, notes the author of this plea. User representatives indeed face persistent obstacles: lack of resources, training difficulties and the feeling of diluted decision-making power in relation to other stakeholders (federations, unions). Furthermore, this formal representation was not enough to resolve the major crises of the system (medical deserts, health inequalities, etc.).
“Based on the evidence provided in France and around the world, this advocacy proposes the development of partnership mechanisms with patients, and the innovation that patient-partners constitute.”
The patient-partner, co-decision maker of care projects?
Christian Saout makes commitment and partnership in health a new horizon. The current challenge lies in the development of the participatory order, which concerns all users and no longer just association delegates. Based on the work of Kristin Carman* and the High Authority of Health (HAS), it presents commitment as a continuum ranging from simple information to close collaboration. The partnership constitutes the final stage: it is based on the co-construction, co-decision and co-evaluation of care projects. This model requires a rigorous method to avoid “ tokenism » (the facade or display partnership) and guarantee that patients really participate in the transformation of the healthcare offer.
Recognition of experiential knowledge
Christian Saout finally pleads for a reduction in the “epistemic divide”** between caregivers and those receiving care. The partnership requires recognition that the patient has experiential knowledge, knowledge constructed through the ordeal of illness and reflection on their own journey, complementary to medical scientific knowledge. By treating these two forms of knowledge equally, the health system can increase its real value. The partnership then becomes a powerful transformation tool, capable of moving medicine from a logic of simple treatment (cure) to a logic of global and human care (care).
Partnership goes beyond collaboration. “We then talk about co-construction, co-decision, co-implementation, co-evaluation, and sometimes even co-responsibility. Here the establishment or service and the patients involved in the action agree on an initiative to improve a service or develop a care offering and lead the action together.”
Rapport partenariats en santé et patients-partenairesLe rapport de Christian Saout pour le think tank Terra Nova identifie quatre domaines d’intervention, où le partenariat apporte une valeur ajoutée mesurable :
– L’amélioration de la qualité et de l’organisation des soins : le patient participe directement à la conception des services au sein des hôpitaux ou des structures médico-sociales. Il apporte son regard sur l’accueil, la signalétique ou l’organisation des services pour rendre le système plus humain et adapté aux réalités du terrain ;
– L’accompagnement et le soutien des pairs : le patient partenaire, fort de son parcours, aide d’autres malades à s’orienter dans le système et à comprendre leurs droits ;
– La formation et l’enseignement : les patients interviennent désormais dans les facultés de médecine ou les écoles d’infirmières. Ils ne sont plus seulement des témoins mais de véritables formateurs qui transmettent aux futurs soignants les savoirs expérientiels liés à la vie avec la maladie ;
– La recherche : le patient partenaire s’implique dans les travaux universitaires ou institutionnels pour s’assurer que les thématiques de recherche correspondent aux besoins réels et aux attentes des usagers. Sa participation permet de valider la pertinence des protocoles et de cosigner des publications scientifiques.Le plaidoyer de Christian Saout.
Notes
*The work of Kristin Carman (published in particular in 2013) constitute a global reference for understanding and structuring patient involvement. His major contribution is to have theorized commitment not as a single action, but as a multidimensional continuum.
**The epistemic divide (from Greek epistemeknowledge) designates the gap which separates two modes of knowledge within the care relationship: the scientific knowledge of the doctor and the lived knowledge of the patient.
