E-santé : gadget ou réel espoir ?

E-Health: hype or hope?

¹ Département Myoinfo, Direction des Actions médicales, AFM-Téléthon, Évry, France
² Direction des Actions médicales, AFM-Téléthon, Évry, France

^* Contact smarion@afm-telethon.fr

Résumé

Les technologies numériques ont commencé d’étendre le champ des possibles pour les patients atteints d’une maladie neuromusculaire et leurs soignants. Du diagnostic à la prise en charge au long cours, la e-santé porte en elle le potentiel d’un puissant moteur d’amélioration du parcours de soins, mais aussi des pratiques et de l’organisation même du système de santé.

Abstract

Digital technologies are expanding the range of possibilities for patients with neuromuscular disease and their caregivers. From diagnosis to long-term care, e-health holds a powerful potential for improving the care pathway, as well as practices and organizations of the healthcare system.

Since February 2018, and within the framework of the National Health Strategic Plan, the “digital revolution” has become a priority in France for the 5 years to come (2018-2022). This statement nonetheless suggests that the road will not be so straight before patients and caregivers can take full advantage from the benefits of e-health, a concept defined by the World Health Organization (WHO) as the use of digital tools in order to “serve the person ‘ s wellbeing”. In the field of neuromuscular diseases, this well-being is currently being undermined throughout the care pathway, which often resembles an obstacle course for both patients, families, and healthcare professionals.