"Doctors administer medicines of which they know very little of to patients of whom they know less, to cure diseases of which they know nothing"
Voltaire, Philosopher (1698-1778)
Is it possible to become an expert on something without having experienced it yourself? Will reading all the books on mountaineering guarantee us success in climbing Everest?
For a long time, the medical world has focused on the study of pathologies without having firsthand experience with them. This allowed for the treatment of a large number of patients, but it also corresponded to a paternalist approach in which the patient was expected to do what was told to heal or live better with his illness.
Expert of Disease + Expert of The Cure
For some time now, the world of health care has been focusing on the experience and the lived experience of the patients to involve them in the steps or the training of care related to their pathology. In this way, patients become experts on their disease and can share their experiences and feelings with other patients or health professionals. This integration is based on therapeutic patient education.
This education aims to facilitate the meeting between the skills of health professionals and the skills of patients. The competencies of health professionals consist of expertise related to the disease and a body of knowledge about health care and services. Patients' competencies are based on their life experiences with the disease and the body of knowledge they have gained from those experiences. The combination of these two perspectives leads to the emergence of new shared skills and improves autonomy and relationships between caregivers and patients. Therapeutic patient education allows:
- Co-constructing and co-facilitating therapeutic patient education programs
- Proposing accessible and personalized care offerings for each patient
- Improving and adapting the posture of professionals
- Involving caregivers throughout the patient's journey
This process requires the involvement of expert patients. But what is an expert patient? It is a patient with a chronic disease who has undergone training in therapeutic patient education. They can speak publicly about their disease and are involved in pilot projects in therapeutic education, training, or research. They are willing to collaborate with other expert patients and health professionals. The expert patient does not impose his opinions and builds his interventions based on official recommendations in force.
But how did this come about? How has the status of the patient evolved? How did he become an actor in the training of some caregivers? Here you are in the theme of the thesis proposed to us by Raymond Merle entitled "Patient involvement in health training and research".
Why Read This Thesis
Raymond Merle introduces us to his motivations by revealing that he is himself suffering from chronic diseases. This experience as a patient has allowed him to identify certain weaknesses in the health care system both in terms of therapeutic patient education and patient involvement in their care.
The author presents us with the history and evolution of the status of patients in the French healthcare system from the post-war period to the present day. This account allows us to understand all the steps that have made it possible to integrate the patient into Health training and research. This story allows us to anticipate the next steps in the patient inclusion procedure as well as the project's limitations.
The thesis is built around a compilation of the author's publications arranged and linked in a discussion leading us towards research perspectives. An effort to synthesize results in a dense text that remains accessible and interesting for the curious.
You Do not Know which Gear to Use?
"What led me to do this research work?
I have had a chronic kidney disease for over 30 years, accompanied by a double replacement therapy by dialysis and kidney transplantation (1992 and 2009), requiring multiple surgeries, daily (oral), and more precisely at fixed time of day drug treatments, a severe cardiac accident requiring a quadruple bypass followed by the installation of a pace maker, and to finish an obstructive sleep apnea syndrome.
The particularly violent entry into the disease and all its consequences led me to a first step of understanding what happened to me. I left the consultation of the announcement of the renal disease somewhat depressed, under the shock and I asked myself lots of questions: why me? why not someone else? what did I do? what did I not do? what should I have done? All these questions remained unanswered. It was as if I was climbing a hill on my bike and in the middle of it, no breath, no image, as they say in dialysis: "loss of sound and light". I quickly understood that I was not alone in my distress. It is in these conditions that, at first, I was interested in what other patients and their relatives could feel and experience by joining the associative environment, and then I got closer to the doctors to evaluate the possibilities of improvement and how to proceed.
This is Where The Shoe Hurts...
This thesis presents the establishment of the University Department of Patients of the University of Grenoble Alpes (DUPGA). The DUPGA is a collaboration between the University, the health and medico-social sectors, user groups, and patient associations. The structure is co-directed by three directors, two of whom are representatives of the medical and pharmacy faculties, and one of whom is an expert patient referent. The mission of this collaboration is to strengthen the autonomy of patients, the well-being of populations, and the efficiency of the health system. The pedagogical approach that can be considered as socio-constructivist aims at transforming the mentalities from "doing for" to "doing with" the patient and their caregivers.
This department linked to Grenoble Alpes University proposes to train patients, caregivers, students, and health professionals wishing to engage with patients in health care, training, and research. The proposed interventions offer people information, training, orientation, and networking; but also studies of partnerships on collaborative training projects and research protocols with health or medico-social structures.
The status of patients has greatly evolved since the post-war period. Many factors have contributed to this evolution such as the increase of chronically ill patients; various health and pandemic events; education and access to information or the promotion of democracy in health and patient empowerment. However, while this transformation is motivated by a medical and political will, some reticence persists on the integration of patients in this ecosystem of which they are actors.
Patients' life experience with their pathology helps to complement, nuance, and improve care practices. Their experiences as field mountaineering patients enrich the knowledge related to their pathology and allow people who have never climbed Everest to better understand and help them.
These medical research findings compel us to reconsider our educational management and organization methods. There are several specializations in the design and implementation of online platforms, such as user experience. Is it, however, the same for educational management? Is it true that we are imposing on the students?
What about you? How does your experience make you an expert?
Thèse présentée et soutenue le 30 mars 2021. Travail réalisé au sein du Laboratoire Bioénergétique fondamentale et appliquée (LBFA) dans l’École Doctorale Ingénierie pour la Santé la Cognition et l’Environnement (EDISCE) : ED 216 (Université Grenoble Alpes) (Grenoble).
Raymond Merle. Engagement des patients dans la formation et la recherche en santé. Éducation. Université Grenoble Alpes, 2021. Français. ⟨NNT: 2021GRALS004⟩. ⟨tel-03262428⟩
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