EXPERT PATIENT PROGRAM
In 2006, with the help of Assumpció González Mestre, we began the Catalonia Expert Patient Program. For several years, Assumpció González coordinated the communications office in the Barcelona area; from there she was able to disseminate work done by international health groups in Barcelona.
In 2010, after a presentation and follow-up session about the Catalonia Expert Patient Program in Barcelona, we asked Assumpció González if she would be willing to start a new group, this time for a chronic illness with characteristics that hadn’t been addressed before in a similar program–Chagas disease. She accepted the challenge, and in 2010 we began to prepare the necessary documentation. Finally, in 2011, we formed the first group of the Catalonia Expert Patient Program for Chagas disease, in collaboration with the Association of People Affected by Chagas Disease in Barcelona (ASAPECHA).
THE CATALONIA EXPERT PATIENT PROGRAM AND CHAGAS
Nowadays, chronic illnesses are one of the largest health and economic challenges for those involved in the healthcare system. According to the WHO, they are a huge financial burden for affected patients themselves, their families, their communities, and their countries as a whole, no matter how developed or underdeveloped.
With such a wide range of chronic illnesses that exist in the world, the age of globalization is causing endemic illnesses that are indigenous to one continent to appear in other parts of the world. This is the case with Chagas disease, which has always been a salient public health issue in Latin America– 8 to 10 million people are estimated to be infected and tens of millions are at risk of becoming infected. Increasing rates of emigration from Latin America to other continents have thus caused Chagas disease to come to the attention of healthcare professionals that had never seen it before.
Since 2005, the strategies used to address Chagas patients have been focused on: diagnosing, treating, following up, preventing initial infection and disease progression, including infected patients in the entire process, and working together with and through their communities. This means correctly using resources, encouraging social networking both inside and outside their environments, and sharing knowledge among healthcare professionals.
In 2011, through the UMTSID and with a group of affected people, the Catalonia Expert Patient Program® (PPE-CAT®) with Chagas disease was formed. This initiative is part of the Prevention and Treatment of Chronic Illness Program as one of the strategies for combating such illnesses, aiming to increase the responsibility of the patients and their caretakers toward their own health and to promote self-care.
The program began with a preparation process, before implementation, in which we developed the methodological guide and educational materials for the specific needs of the sessions about Chagas disease, which were to be given to expert patients and healthcare professionals who would serve as observers. Then, we went through the materials with the expert patients and the community health representatives to make sure that the content and the language used was appropriate for the intended audience. Finally, we presented the program to the UMTSID professionals to gain their technical opinion.
The sessions consisted of a detailed program, as well as surveys that allowed us to evaluate the benefits offered by the program.
EXPERIENCES AND REFLECTIONS
Through the experiences we had with this program, we learned how to portray the expert patients as people who are encouraging, supportive, and willing to follow through with the patients they lead. This is a very important notion when it comes to promoting healthcare among people affected by Chagas disease. They play a fundamental role in the area of mediation when they integrate their activities into everyday life, investigating the needs of their community, especially when they work with communities where there are barriers that keep people from accessing information and healthcare services.
They are very well-informed about their disease and they have developed their own coping tools that help them to manage the physical, emotional, and social impact of the disease. In the published literature, there are patients who say that the biggest impacts the disease has on the life of individuals are the psychological and professional repercussions, which generate apprehension that transforms the patients’ lives.
The expert patients are not only people that we need to accept, but also a role that we should happily support. Giving affected patients an active role in a participative healthcare program is the key to the present and future of long-term chronic illness management, and should be considered a new and innovative approach in healthcare.
The intervention of programs like this promotes the development of a collective (the affected people) through their active participation in changing the situation, training and empowering the collective to promote management of their own health. This strategy combines expert scientific advice, emotional guidance, and practical experience.
The expert patients in the context of Chagas disease entails strength and a key role, like multiplying agents and awareness-raisers of family, group, and community screening.
PPE Catalunya Supervisors:
Paloma Amil Bujan (Departament de Salut, Generalitat de Catalunya.
PPExpert Chagas Supervisors:
Isabel Claveria Guiu / Jordi Gómez i Prat (Drassanes-Vall d’Hebron Tropical Medicine and International Health Unit/PROSICS)
PPE Chagas Team:
Estefa Choque, Jordi Gómez i Prat, Hakima Ouaarab, Isabel Claveria Guiu (Drassanes-Vall d’Hebron Tropical Medicine and International Health Unit/PROSICS)