Heads of PPE Catalunya:
Assumpció Gonzalez Mestre, Paloma Amil Bujan
Heads of PPE Chagas Disease:
Isabel Claveria Guiu, Jordi Gómez i Prat
PPE Chagas Disease team:
Estefa Choque, Jordi Gómez i Prat, Hakima Ouaarab, Isabel Claveria Guiu
The Catalonian Expert Patient Programme was launched in 2006 by Assumpció Gonzalez Mestre, who coordinated the Barcelona communications office for several years, disseminating information obtained through work on international health in Barcelona. In 2010, after attending a presentation and follow-up session on the Catalonian Expert Patient Programme in Barcelona, we asked her to create a new group for a specific chronic disease, albeit one with very different characteristics to those addressed up to that point: Chagas disease.
The challenge was accepted, and in 2010 we started preparing the documentation. The first group came together in Barcelona in 2011, in collaboration with the Barcelona Association of Persons Affected by Chagas Disease (ASAPECHA).
THE CATALONIAN EXPERT PATIENT PROGRAMME AND CHAGAS DISEASE
Chronic diseases are one of the major health and economic challenges currently facing health systems. According to WHO, they are a huge burden for the individuals affected as well as their families, communities and countries, whatever their level of development.
Globalization is contributing to the wide array of chronic diseases present in our environment by helping diseases endemic in other continents, like Chagas disease, spread in other parts of the world. Chagas disease is a significant public health problem in Latin America, where an estimated 8 to 10 million individuals have been infected and tens of millions are at risk of contracting it.
Since 2005, strategies addressing Chagas disease have focused on diagnosing, treating, monitoring and preventing infection and disease, involving the individuals affected throughout the process and working with the community to manage resources, promote social work in local networks and further afield, and disseminate knowledge on the disease among health workers.
In 2011, the Drassanes Tropical Medicine and International Health Unit (UMTSID) worked with individuals diagnosed with Chagas disease to launch the Catalonian Expert Patient Programme (PPE-CAT®) for Chagas disease. This initiative, part of the Chronic Disease Prevention and Care Programme, is one of the strategic areas of action for chronic disease management. It aims to boost the responsibility of patients (and their carers) for their own health and to promote self-care.
The programme consists of a pre-implementation process that involves the preparation of methodological guidance and specific educational material to be used during sessions on Chagas disease by expert patients and health workers acting as observers. The material is then reviewed with the expert patient and the community health worker to ensure the content and language used are appropriate for the intended users. The programme is then submitted to UMTSID professionals to obtain their technical opinion.
The sessions follow a detailed schedule and involve various surveys that are used to gauge the potential benefits of the sessions.
EXPERIENCES AND REFLECTIONS
The experiences obtained to date highlight the role of expert patients in moving the initiative forward and bringing it to a successful conclusion, which is a key element to bear in mind when promoting health among individuals affected by Chagas disease. They perform an important intermediary role by integrating activities into daily life and investigating the needs of their community, particularly when working with communities that face major obstacles in access to information and health services. They understand their condition and have developed their own “tools” to help them manage its physical, emotional and social impact. In the literature, patients have stated that the greatest effects of the disease on the lives of individuals are the psychological and professional repercussions, which create a certain apprehensiveness that changes the way they live.
The role of the expert patient is not just one that should be adopted, but one we should encourage. Actively engaging patients promotes participatory health care, which is essential for the current and future management of chronic diseases. It represents a new approach to health care based on cooperation with affected individuals. Programmes such as PPE-CAT® encourage those affected to create a community to proactively transform their situation. It educates and empowers the community, and encourages them to manage their own health. This strategy combines expert scientific advice with emotional advice and practical experience.
In the context of Chagas disease, expert patients play a strong and essential role in imparting knowledge and highlighting the importance of screening to relatives, group members and communities.