A WEB-BASED PLATFORM FOR THE THERAPEUTIC EDUCATION OF PATIENTS WITH PHYSICAL DISABILITIES

The therapeutic patient education (TPE) aims at helping patients and relatives to understand diseases and treatments, and collaborate in healthcare by taking an active role in the management of a chronic disease, in order to improve the quality of life. This model has been largely developed in the French speaking European countries, which have adopted a series of laws and regulations to ensure the patient can access and comprehend easily the information related to his/her state of health, with the objective of transforming him/her into a fundamental care giver that will work in partnership with the health professionals. This transition from the classical patient compliance to empowerment is a revolutionary concept in terms of patient education. As in any form of education, individuals are involved in a long-term learning process, in which they have to acquire knowledge, competencies and develop behavioral skills to deal with their disease and become as autonomous as possible.

In practice, this consensual idea is not so easy to implement. A patient with a chronic disease is surrounded by several health professionals who use their own technical language, which impedes the interdisciplinary exchange of information between specialists and from the care giver to the patient. In addition, the current tools in TPE are essentially based on a rigid form template, inspired by the paper format, which challenges the construction of a customized strategy to evaluate the patient needs. These are not adapted to a self-evaluation by patients because they are difficult to understand by non-specialists. At last, they usually focus on a determined disease instead of taking into account the global state of the individual and therefore disregarding important parameters such as pain or mood.

In order to enhance the TPE, we have developed a web-based application that permits a customized and strategic evaluation of neuromuscular deficiencies as a whole (http://enterface13.net/am/). The main challenge of this project is to construct a tool which is accessible for ordinary people but still maintains useful information for health professionals. The user interface is mainly composed by pictogram-based questionnaires and dynamic forms to allow an intuitive utilization even for non-specialists. The originality of the platform is based on a tight collaboration between patient, relatives and professionals. At a socio-educative level, the tool is used to share data and to be a language interface to facilitate the communication between health, social and administrative specialists. At a medico-educative level, the multidisciplinary healthcare cooperative network is improved thanks to a multi-users access, a customization of the application using, and different reading and consulting levels of the data (from an overview to a detailed analysis). On one hand, the goal is to create a real clinical record in order to prevent the repetition of the same questions in various services and to complete questionnaires that depend on the medical context. On the other hand, this approach promotes an active involvement of the patient, by allowing for self-evaluation. Following a questionnaire of satisfaction, the platform is assessed as useful and didactic by the patients and the health professionals that tested it.