Patient University

Written by Giovanni Reibaldi, on 25 June 2018

For this third episode of our series "Hospital by Patients" we are not going to the hospital but to the university. The Pierre and Marie Curie University (now Sorbonne University) has housed since 2009 an unprecedented initiative: the University of Patients, which trains and awards diplomas to patients to value the expertise they have acquired through their experience with illness.

Recognizing Patients' Expertise through Diploma Programs

France, like the rest of the Western world, is facing an increase in chronic diseases, and today more than 17 million French people are affected by one of these conditions (cancer, diabetes, MS, HIV, etc.). However, these patients, by living daily with their illness, acquire experiential knowledge and skills related to it, which they can leverage. It is the goal of Professor Tourette-Turgis, a teaching researcher who has been involved in the fight against AIDS since the early 1980s, to have patients recognized as full-fledged actors by the healthcare system. Therefore, in 2009 in Paris, she created the University of Patients, hosted by the Sorbonne University Medical School, which allows patients to be trained and awarded diplomas to recognize and value their knowledge for themselves but also to share with caregivers and the community.

Valuing the Role of Patients and Allowing Them to Become Actors in Improving Our Healthcare System

The contributions of diploma courses for patients often go beyond acquiring new knowledge and recognizing their skills. Because the University of Patients not only has a training vocation, it also aims to be a place for sharing experiences and a springboard for self-esteem, often undermined by the experience of illness. For patients who have gone through the University of Patients, it is an environment conducive to creating projects, sharing, and dialogue with peers and caregivers. Not all students become professionals after obtaining their diploma; in fact, 10% find employment, but for all, it marks a new stage in their personal journey. Some continue their studies in master's and doctoral programs, others get involved in the associative field or become volunteer or salaried patient experts, while others innovate and create new professions. Thus, the training is both a lever for professionalization and personal development.

Beyond the benefits for trained patients, the skills they develop at the University of Patients enable them to be valuable partners for caregivers in improving the quality of patient care pathways. Indeed, they can act as patient resources for peers with the same illness as them, contribute to creating Patient Therapeutic Education programs, or participate in training the caregivers of tomorrow by giving lectures in nursing training centers or medical schools. At the institutional level, too, patients are present, as a UDP graduate was later hired by the Institut Curie as a care pathway coordinator for foreign patients. These initiatives allow patients to be placed at the heart of our healthcare system by giving them the means to participate actively.

A University for and with Patients

Patients trained within the University of Patients are chronic patients with various pathologies and carrying different projects. Some come to value their experience as patients, others to recognize and develop their skills within the framework of associative commitment, and still others to professionalize themselves. However, in this unique university, patients are not only students; indeed, they can also be found among the ranks of teachers, alongside university professors or healthcare professionals. Some of them, after attending the University of Patients, remain there as employees and work as educational engineers or communication managers.

Patients are thus the main audience of this university, but the various training courses are also open to caregivers, which allows them to be introduced to patient partnership and opens up dialogue between caregivers and patients in a more neutral setting than that of the hospital.

An Active and Diploma-Granting Training to Transition from Patient Status to Expert Status

The University of Patients currently offers four diploma courses: three University Diplomas in oncology, health democracy, therapeutic education, and a Master's in therapeutic education. These courses are taught by a wide range of healthcare professionals, academics, and patient experts, allowing for the cross-pollination of knowledge and approaches. The University of Patients' goal is to offer training with a decidedly active pedagogy tailored to an adult audience. Thus, the teaching alternates between lectures and collective and playful activities to put acquired knowledge into practice. For example, students must popularize a medical concept for different audiences or simulate an interview to be recruited as a patient expert in a hospital, a Regional Health Agency, a health center, etc. These role-playing exercises help them position themselves in a role that is still new in our healthcare system. Indeed, as patient experts, they may eventually face the mistrust of some healthcare professionals, explain and define their role, which complements the caregiving teams, and know how to step back from their own experience as a patient.

But a diploma also implies the validation of skills and the defense of work... These are designed to make patients reflect on their experience of training, their projects after obtaining the diploma, and the tools to develop for their future interventions as patient experts. No written examination, certainly, but a dossier to be submitted followed by a defense before a jury, as in any university training. These collaborative or personal works include keeping a journal and learning notebooks throughout the training, project engineering, or creating a toolkit for the patient partner.

The practical aspect and professionalization are present at every stage of the training, and those who wish can also undertake an optional internship at the hospital or in any other structure where they can assert their student status. This experience allows them to understand their roles as patient partners or patient experts and their place within caregiving teams, but also to be ambassadors of patient expertise within healthcare structures. The diploma training is thus a means of building an identity as a patient expert on which students who wish can rely to be recruited within various healthcare institutions.

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