Among the 15 million people living with a chronic disease in France, some have chosen to put their experience at the service of other patients. They are called expert patients. We suggest you discover how one becomes an expert patient and what this role consists of.
An expert patient is a person :
- who lives on a daily basis with a chronic condition.
- who has learned to know and manage his or her disease
- who lends his or her experience to other patients with the same condition.
These patients who share their experience to help others are also called patient partners, patient resources, health mediators or pair-helpers.
But whatever title they are given, they combine the experience of a chronic condition with a desire to help others.
Expert patients work with people who have the same chronic disease as they do.
This may include cancer, particularly Breast cancer which is most common in women, diabetes or mental illnesses such as schizophrenia.
An expert patient is above all a peer helper. His or her main mission is to exchange and share experiences with patients and their loved ones, face-to-face or remotely, by phone or chat.
This patient partner of the medical profession collaborates with doctors: for example, he or she can participate in the development of therapeutic education programs and contribute his or her testimony during medical training sessions or medical or scientific conferences.
Facilitating therapeutic education workshops with patients is also part of the missions of expert patients. Indeed, being able to exchange with people who share the same journey helps to release the word of patients and break taboos.
This accompaniment of patients by peers also contributes to the prevention of relapses in the case of cancer as well as mental illness or diabetes.
Finally, expert patients can also perform other roles in parallel, such as carrying the voice of patients to the medical profession (for the organization of care in hospitals) or advocating their interests to institutions or associations.
Even if one has experienced the same health problems, helping other patients is not something that can be improvised. Expert patients undergo specific training before they can take on this role.
It was in 2009 that the first university diploma (DU) in therapeutic education training was created at the Sorbonne. In 2010, Professor Catherine Tourette-Turgis founded the University of Patients there (see link below).
It provides a 120-hour training course accessible to holders of a bachelor's degree or equivalent. It teaches, among other things, how to conduct a therapeutic education interview, how to lead individual or group sessions, and how to design and implement a therapeutic education program in a hospital department.
What was merely voluntary work in the 1990s has become a diploma course, offering real recognition to the patient partners, even if they cannot strictly speaking make it their profession.
Depending on the case, an expert patient can intervene on a voluntary basis, as a compensated speaker or as a salaried employee in care structures or patient associations.
If you suffer from a chronic disease and are interested in becoming a patient-expert, you should know that there are two main paths to do so:
- University degrees offered at the Sorbonne but also at the Faculty of Medical and Paramedical Sciences of Aix-Marseille and at the University of Grenoble Alpes.
- training around a specific disease provided by some patient associations, such as the French Federation of Diabetics, the France Kidney Association or the French Multiple Sclerosis Association.
For many former patients, becoming an expert patient is a way to turn a dramatic episode in their lives into something positive.
But being affected by the disease yourself is not enough.
To become a health mediator, you must also :
- know how to listen
- know how to communicate
- be a teacher
- be able to popularize medical knowledge without distorting it
- not to overstep his/her role
- be humble and attentive to others
- not to forget oneself and to know how to distance oneself when it is necessary.
In general, health professionals are quite satisfied with the presence of expert patients on hospital wards.
Indeed, they measure the interest for patients to be accompanied by former patients.
Sometimes the presence of an expert patient even helps to transform the relationship between doctor and patient.
To date, oncology departments have recruited more than 30 expert patients to the Patients' University.
Author Loïc on 30 October 2023
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