Innovative long-term follow-up strategies for patients with chronic diseases

Séminaire FSER organisé par Jean-Philippe Assal et Rafael Bengoa du 2 au 7 octobre 2006

Participants

Jean-Philippe Assal, Tiziana Assal, Arun Baksi, Benedetta Barabino, Rafael Bengoa, José Boavida, Alain Braun, Elisabeth Debenay, Riad Farah, Rosario Garcia, Isuf Kalo, Peter Key, Line Kleinebreil, Karin Lörvall, Carlo Augusto Lovagnini-Scher, François Paré, Joao Raposo, Juan Ruiz

Compte-rendu

Most patients with chronic conditions are still not getting the right care. In order to continue addressing the needs of these patients, and the way to transform the healthcare system to provide better care and prevention, the Foundation for Research and Training in Patient Education, Geneva, is committed to providing further research and education and systematically organises specific workshops to further the improvement of long-term accompaniment of patients.

« A citizen’s guide to chronic disease care: Taking action to make your voice heard » is a consequence of a series of activities in the past years centred around patient education and empowerment, but especially the result of a meeting held in Les Treilles, France in 2006.

One of the main conclusions of the meeting in Les Treilles was that there are numerous declarations for all types of chronic conditions, both national and international, but these declarations do not seem to be a sufficient force for change. The admirable work of many professionals and patient organizations in the past years in favour of better chronic care and therapeutic patient education needs to be further energized in order to bring about more powerful change.

Among other things, much more action had to be happening at the ground level.

One approach to encourage more action was to prepare this Citizen’s Guide on Chronic Disease as a tool to help patients and patients’ associations to engage with the different structures that need to be influenced and also to continue helping them in their own successful self-management of their disease.

The population in general and patients in particular have been hearing from Governments that it is their responsibility to change life-styles. In addition to this responsibility, this document signals the need for the population and patients to be able to engage also with the reorganisation of the health system to their needs and the obligation of governments and insurance companies to adapt to these demands. This document helps to create the environment for more effective action by the citizen.

All these changes have to be done in a setting in which the traditional arrangements in health care, centred around a bio-medical model and a traditional provider-patient relationship, is complemented by new approaches which engage the creativity of the patient, the family and the community.

When a person is suffering and seeks help, health care providers first have to make a diagnosis. Then medical knowledge, usually coming from the biomedical side, will deal with the best choice of the treatment and hopefully the disease will be cured. Unfortunately, more than 80% of medical consultations are due to chronic diseases which cannot be cured, but which can be well controlled. This quality of control is directly dependent on how the patient and his or her family have been educated as to how to control the disease. WHO produced a document in 1998 (ISBN: 92 890 1298 6) on therapeutic patient education. This document had a tremendous impact and there are a growing number of centres who practice therapeutic patient education, hoping therefore to improve patients’ autonomy and self-management. This dimension, although fundamental, is not sufficient. There is today an important drive for long-term accompaniment of patients where the various characteristics, personal, familial, professional, social, economic and so on, have to be taken into account in this long-term follow-up. Medical schools are always lagging behind this global need.

Another more recent challenge is to promote the concept of medical citizenship of the patients. This document deals with this objective. Medical citizenship could be understood as the active role of the patient, to help health care providers and health decision makers to understand and to adapt their approaches to the personal needs of chronic patients who have to manage their own treatment and have to adapt it to their daily lives.

Our Foundation for research and training in patient education will continue striving to support those groups of patients and citizens which engage in the strengthening of the chronic disease agenda.

This meeting allowed 20 participants, coming from eight countries (Albania, Cuba, France, Italy, Portugal, Spain, Switzerland, UK) to express their ideas and experiences in this field of patient accompaniment. They all had a personal, wide experience in the care of patients suffering from chronic diseases.

Administrative and editorial support was provided by Brenda Unsworth and Melodie Kaeser.