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Patient-experts, new voices for patients

Patient-experts, new voices for patients These new actors in the medical community are proving to be valuable allies, as much for patients as for doctors or laboratories. Having become "experts" in their pathology, often chronic, what roles do they play? And what are the limits of this double hat?

Sometimes a resource, sometimes a partner, a training pair or a facilitator, the "patient-expert " accumulates labels, for lack of an official definition. In France, the consensus designates it as the one who, suffering from a chronic illness, develops a detailed knowledge of it over time and eventually shares her expertise in daily life .

"I know what breast cancer is, but I don't know what you feel when you have it," observes Dr. Hortense Franck, oncoradiation therapist at the Breast Institute - Clinique Tivoli in Bordeaux. The professional hired Sabine Dutheil as a patient-partner (translation:who collaborates with the medical team within the department). Side effects of the treatment, management of the children or the couple, return to work... "the fact that she experienced the disease in her own flesh allows her to communicate better on these issues with her peers; this helps us enormously, for example by case of blockage in the doctor-patient relationship", illustrates Dr. Franck.

The reception by the patients of this new skill, presented on the same level as sophrology or physiotherapy, has been extremely positive. Result:the department hired a second patient-partner this year.

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Booming training circuits

"When the first profiles emerged in 2005, the reaction of the medical profession was hesitant. It's simpler today, as demonstrated by the growing number of structures that integrate them", notes Audrey Namur, head of the animation center of the French Federation of Diabetics. For ten years, the organization has been piloting Élan Solidaire, a peer support system that includes a pool of patient experts. "Diabetes patients manage their pathology most of the time on their own. We organize meetings around our patient-resources to help them cope better", illustrates the development manager.

Expert patients can also intervene in hospitals or at the heart of other structures, in complicity with one or more professionals, through programs validated by regional health agencies. They are mostly volunteers, even if some trades are beginning to emerge.

If the status of sick is necessary, it is however not sufficient. Becoming a patient-expert requires a variety of skills that are ideally learned… at university! Created in Paris by Professor Catherine Tourette-Turgis, the University of Patients is celebrating its tenth anniversary.

It offers three qualifying university degrees (Accompaniment of the patient journey in oncology, Democracy in health, Therapeutic education) and a range of masterclasses more agile. “It is sometimes a second chance school for patients deprived of studies by the disease”, notes Sihame Haba Chkir, communication manager for the sector. "Their secular knowledge is a valuable resource that infuses all strata of the system, including the political side when these patients struggle for access to certain care."

In addition to university degrees, some associations set up their own training programs to meet the needs of their members as closely as possible. The French Federation of Diabetics thus offers specific cycles. "For their design, we work with doctors and with the French Association for the Development of Therapeutic Education (AFDET)", specifies Audrey Namur.

Help patients and educate professionals

Same logic on the side of the Alliance des Maladies Rares, which brings together a constellation of pathologies for which the lack of information is legion. Cécile Foujols, carrier of congenital torticollis (Klippel-Feil syndrome) since birth, trained with the collective of associations to enable her to advance the cause of this little-known pathology.

"His medical follow-up is difficult; diagnostic wandering, common", regrets the founder of the French association of Klippel Feil syndrome (AFSKF). It therefore organizes discussion groups or meetings to help patients while raising awareness among healthcare professionals in reference centers or university hospitals. "Many radiologists miss this malformation, so the neurological lesions that are often linked to it. Stupidity can be done very quickly," she says.

With the installation of Covid-19, for example, his association created an emergency card to alert hospital staff:"In the event of an emergency intubation, it is possible to break the vertebrae of a person carrying this rare disease if we take it carelessly", points out Cécile Foujols.

Listening to the service of the sick

"I consider myself more of a resource patient, because I don't feel like an expert in my pathology," says Mado Gilanton. The president of the Apaiser association works in her own way for the two rare pathologies she suffers from:non-genetic malformations of the cerebellum and spinal cord lead patients through a complex journey including a distressing surgical intervention. "I don't see myself taking a scalpel to open someone's head, I don't have the medical and neurosurgical knowledge, so the subtleties that concern it," she nuances.

Trained in therapeutic education, she says she is above all a listener. This does not prevent him from participating in the development of specific programs, hand in hand with doctors, nurses, social workers. Example ? The creation of an information tool on how the surgical operation takes place in the operating room. "I advised doctors to communicate more about the before and after of the act", specifies Mado Gilanton.

Should you shave your head? Can a loved one be present when I wake up in follow-up care? How long should a bandage be worn around the head? When can I get back behind the wheel, do my shopping, take care of the children? Can we go to the hairdresser, get a dye? "These are the questions that patients ask me most often; identifying them and relaying them is what we call patient expertise", she says. "I am not an alibi patient, which unfortunately happens in certain circuits where the doctors believe that we have nothing to contribute."

According to Professor Catherine Tourette-Turgis, one of the obstacles to the development of is above all cultural:"Health, care and education are not yet ready to set up an organization that would not be not solely based on the authority of the knowledgeable. However, it is a question here of taking into account the lived experience of the services by the users, the patients, the learners."

A job-sheet to adapt on a case-by-case basis

For Dr. Hortense Franck, the key to successful patient-partner integration depends on the attitude of both parties. The patient should not arrive thinking that she is going to teach the caregiver something. As for the medical team, it must learn to rely on this new skill. "Our team has fully understood its interest; in the same way as that of therapeutic education, where the more the patient knows about his disease, the more the exchange with the medical profession is facilitated", testifies the oncoradiation therapist. "Our doctors and surgeons were open to the experience from the start, especially since Sabine was able to integrate. Today, everyone immediately feels when they need to call on her. "

The service exchanged several times to specify the job description that corresponded to it. According to Dr. Franck, it is built on an artisanal scale depending on the structure concerned. “We cannot copy and paste Sabine into other structures,” she believes. The function of the patient-partner must remain adaptable in order to be able to blend into the course of care.

Certain limits must be respected, believes the pro:the patient-expert must not give medical or technical advice. "The function has a lot of future provided that it is conditioned to a qualifying diploma (university) and to a regular updating of knowledge", she adds. "I imposed psychological supervision on our patient-partners to help them maintain a fair distance between their sick status and their professional status."

Thinking about shared care

On the side of Catherine Tourette-Turgis, we underline the importance of the creation of new professions and training but also the necessary financial reorganization of the healthcare system. A Big Bang that involves a revolution in mentalities. "At the philosophical level, it is still difficult today to think of shared care and vulnerability as a resource", she notes. The professor, decorated with the Legion of Honor, however, remains very positive about the rise of patient-experts:they are needed throughout the health industry, including laboratories, as shown by the brilliant career of Anne Schweighofer.

This patient living with metastatic cancer is the founder of Les Patients s’Engagent. The platform highlights the creative initiatives of sick activists. She has also created a tailor-made profession, "patient engagement consultant", by launching Patient Conseil. The firm collaborates with the medical and pharmaceutical industry to integrate patients into the projects that concern them, instead of sticking to the recommendations of a communication and marketing agency. "This is called co-construction" defines Anne Schweighofer. "There are tons of brochures for sufferers, but few that target their needs."

Developing the patient-partner path for Roche Laboratories, developing reception areas for Sanofi, collaboration with the Fondation de France... "I try to plant small seeds of patient resources everywhere", smiles the consultant all fired all flame. "I see great initiatives being carried out by people who take on their pathology to make it a rich project that transforms the lives of their peers."

So many sources of potential innovation. On the laboratory side, the will is there but the collaborations, mainly with patient associations, remain in their infancy, she says. Anne Schweighofer already organizes meetings between patients and laboratory teams so that the latter can understand the daily lives of patients. Putting people back into the profession, giving meaning to medical work... The DNA of the patient-resources is above all an activist.

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