‘EXPERT PATIENTS’ offer support to THOSE affected by heart failure



The spectre of heart failure continues to advance slowly but surely. However, a new initiative has just been launched, which should help improve the day-to-day quality of life of patients affected by heart failure, patients who often feel helpless in the face of their diagnosis and the symptoms of this painful cardiovascular condition. At the centre of this new initiative are ‘expert patients’. These are individuals who also suffer from chronic illnesses, whose experience is much sought-after by the medical profession. In fact, doctors are going so far as to employ these people to work in cardiology and re-education units.

Why has this idea become so popular, and how do ‘expert patients’ enable patients suffering from heart failure to cope better with their condition on a day-to-day basis?

As has been shown in the past, one of the main problems related to heart failure, regardless of category, lies in the high proportion of patients who have to be re-hospitalized : in the twelve months following the initial diagnosis of heart failure, one in two patients are readmitted to hospital due to their condition flaring up again. Hormis la sévérité de la maladie, les principales causes sont l’arrêt du traitement, l’arrêt du suivi ou encore l’arrêt du régime peu salé. Aussi l’écoute, l’empathie, la proximité, mais aussi les méthodes d’Education Thérapeutique expérimentées et suggérées par le patient expert pourraient permettre de réduire le nombre de ré-hospitalisations mais également le nombre de décès et le coût de l’insuffisance cardiaque. 

Besides the fundamental seriousness of the condition, the main reasons for this are the stopping of the program of treatment, the coming to an end of any kind of follow-up and the abandonment of a low-salt diet. In these circumstances, a listening ear, empathy, someone who’s close at hand, not to mention different approaches to patient education which have been tried and tested by the expert patients themselves may lead to a reduction in the readmission rate and in the number of deaths caused by heart failure, and thus its economic cost too.

Dressed in a white smock and supervised by a doctor or nurse, the expert patient is able to put the patient at their ease because they are going through a similar challenge. Without overstepping the role that’s assigned to them, expert patients help other patients to assume their role in this situation and to become more conscientious in keeping to treatment plans. Our greatly-missed President and Founder, Danièle Hermann would have loved this very person-centred initiative, as she was affected by heart failure herself and was instrumental in passing on much useful advice on how to live with this chronic condition – through her books and her commitment to this Foundation.

Who can become an expert patient?

In addition to nursing staff, this program is open to anyone coping with a chronic illness who wishes to use their experience and share what they have learnt with the wider community in the spheres of healthcare and training. Applications to this program will be largely judged on the basis of covering letters. A dissertation must be written at the end of this officially-recognized course. Research projects, carried out individually or in groups, also form an integral part of the course. There are currently a number of ‘patients’ universities’ in France under the aegis of medical schools which validate the course taken by these expert patients.